meeting with Carl C. Kao

[Birde]

Dr. Young, we met with Dr. Kao today (a day earlier than what was
planned). He came to our home with his nurse who travels with him
to Ecuador. He stayed almost 3 hours. He had us view a video,
which he left for us, and explained the video quite well. His
examination was thorough, gentle, and quite professional. He says
that I am T10-incomplete as I have voluntary muscle movement below
the injury. He said that is good. Now for your questions- "
please say hello to Dr. Kao from me. I have not seen him in 10
or so years." Dr. Kao smiled and sort of chuckled and said "oh yes
Dr. Young, how is it you should know him?" I explained through
cando.com and he wrote it down and said he wants to check into
this!! He said to say "hello". "If I were you, I would ask him
whether my spinal cord
is compressed or tethered." COMPRESSED is what he said. "If so,
I would ask him what experience
that he has had with functional recovery resulting from decompressing
or untethering such spinal cords." part of his response was this" in
1983 he concentrated exclusivly on the care of SCI patients.
Recognizing that a reduced and fused spine after
fracture-dislocation was the fundamental condition for any spinal
cord reconstruction, he began to perform a wide variety of surgeries
for spinal fusion. He was exposed to Roy-Camille's, Dick's and
Zielke's fusion techniques which he preferd to Harrington's. With a
good reduction and a solid fusion of the spine, he began to perform
a meticulous posterior and anterior decompression including
microsurgical neurolysis and wide watertight dural graft. He began
this procedure at the lumbar areas to decompress the cauda equina
and found that the result was quite encouraging. He began to
operate on the thoracic levels, this time with a variety of
reconstructive procedures for the nerve roots and the spinal cord
using sural nerves. Positive results were obtained in "well
selected cases", although it was!
still limited. With the aid of
below the knee boots for ambulation, as well as special physical
therepy technique using the Elgin table to improve the strength of
the recovered muscles, he reported the first 90 consecutive cases at
the 8th International Congress of Neurological Surgeons in
Toronto...he has had many more since that time (1985) and is in the
process of writing another book with his work, findings, success and
failures. "I would ask him to describe in
detail the therapies that he may be proposing to do, including cells
or peripheral nerves that might be transplanted, omentum transplants,
growth factors, and any other experimental treatments." He plans to
A.) remove my rods and pins( and later re-insert them) to cut
down(away) the T10 vert. in order to straighten my spine the proper
way, B.) take sural nerves from my leg(S) and transplant that to the
1 1/2 inch "gap" in the cord, C.) take schwan cells from another
part of the leg(s) and transplant that to both ends of where the
spinal cord meets with the sural nerve D.)take a free, unattached
piece of omental tissue and surgically place it over the injured
cord and connect it to a surrounding vascular source E.) 2 wks. of hyperbaric o2
therapy for 2 1/2 hrs. a day, full bed rest as well. He also said
that I will get 4AP - after words- I will start that in the states.
I was impressed with him over all. We talked a great deal about
Mellisa Holley-Israel, Cheng-Taiwan, as well as others......Birde

[Carl C]

Birdie,
Do you know if this procedure has been tried on people who have already regained some walking ability? Is there some way I can get in touch with Dr. kao to discuss this?

Most of the stories i hear are concerning para's or quads that had little to no movement below thier injury level. I would think that it could be quite benificial to walking quads also, but maybe those of us have already regained as much as possible.

Are there any walking quads out there who can shed some light on this?
Thanks
Carl Champion,
C-7 incomplete, walking quad

[Birde]

Dr. Carl C. Kao 3801 Connecticut Ave., N.W., Suite 100 Washington D.C. 20008 PHONE:202-362-6421 FAX:301-388-0994

[Sue Pendleton]

That's really interesting, Birde. Yale had a news release go out this morning about their first transplant of sural nerve cells to the lesions of a MS patient in her brain. Their research is funded by The Myelin Poject but is defintely something to keep a close eye on for those of us with SCI, TM and the leukodystophies. It was a long time coming but that Dr Kao uses this material too is cool. Good luck which ever way you decide!

[rdf]

Good luck, birde. Sounds like it is something you should consider very seriously. From what you say, he sounds sincere and knowledgeable.
(rdf)

[The Human Cannonball]

Hi Carl.

As A c-7 incomplete walking quad post 9 years, I am personally waiting to at least try 4-ap when it hits the phase 3 study here in Chicago, hopefully freakin soon. I personally would not risk the LOSS of function , cost, no guarantees ,and still no concrete proof of amazing recoveries.

Being so close to the AB world yet so far, I am as anxious as you are to improve even more. But we are still in early stages of human trials, a little more patience and we will get there. http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/biggrin.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

[mikek]

Thanks Birde for the information. Dr. Kao will
be in So. Fl and is seeing me Aug 1. He says he is seeing others as well, if so let's compare notes and pro's and con's of our meetings.

Mike

[Birde]

Carl C., I don't know how many sci patients Dr. kao has worked with/on that already had ambulatory function. I do know from his published reports that he has indeed done sural nerve grafts of disrupted cauda equina on some who were ambulatory before the surgery. He claims to have had good results. He reported that in Toronto at the 8th annual congress of neurological surgery. Dr. Kao says that "at present different opinions exsist among physicians on the management of thoracolumbar injury with paraplegia. Statistics show, during the acute stage, 66% improvement by laminectomy, 61% improvement by spinal fusion and 64% improvement after postural reduction without surgery. It is possible that the data of approx. 60% improvement simply reflect the natural recovery from the injury rather than the result of a treatment. In contast, if a treatment is tested on the cronic, well established spinal cord injuries, any further neurological improvement can be claimed as being the result of the treatment. The experiance from cronic injuries is therefore more conclusive than from the acute cases, and may in turn become helpful in the management of the latter."

[et]

Does anyone know if Dr. Kao had any c level ( like c6/7 complete) patients benefit from his treatment ? Do those patients gain any bladder or bowel control or able to walk again after the surgery in the past years ? It seems that his treatment is more beneficial to the T level or lower level patient.

[Birde]

et, again, I am not sure how many success stories he has with cervical injuries. I did ask Dr. Kao while he was here: what area have you seen the best results in, regarding your work? (i.e. cervical, thoracic, or lumbar) His answer was mid/lower thoracic. But he said that may have to do with the fact that he sees and treats more at that level. You may want to fax him that question, or call and speak to him, he is patient and kind and really seems to want to extend help to sci individuals. He has published in the past regarding this question. In 1993 (Acapulco, Mexico-World Fed. of Neurosurgical Societies) He wrote " the best result is seen among lower thoracic and upper lumbar cases, followed by upper thoracic, and the cervical cases resulted in the worst outcomes". Keep in mind that was 1993, he may have seen different results since that time.

[overtheline3]

so he how long has he been doing this?and how come this has never come up that seriuos on spinewire?it just seems everyone is looking into this right know,how come not two years ago,what has changed?thanks

[rosebud]

The address for Dr. Kao is
3801 Connecticut Av. N.W.
Suite 100
Washington, D.C. 20008

Phone 1-202-362-6421

He has done at least 100 surgeries, probably more, in Argentina, Ecuador, Mexico, and Taiwan. A video of the process is easy to get.

[Birde]

To date Dr. Kao has done over 500 of these procedures. He has said that he on average does about 80 SCI individuals a year. There are 12 patients schedualed to have this operation during the time I go. I know 2 others besides myself (not personaly). About 5 years ago there were quite a few people having this done.

[Birde]

http://runningbear.com/main/Ed/text/urls/Dr.CarlKao.html

[Birde]

http://www.irontontribune.com/NF/omf/itdaily/news_story.html?[rkey=0007135+[cr=IT+ssiuname=WebOSTTN+ssipwd=TTN4A3C3F95

[overtheline3]

hay birde,i just sent a fax to dr.kao,hopefully he replies soon,i just dont understand how come poeple didnt talk about going over there six months ago on spinewire if he has been doing this so long?it just seems this is a knew thing but hes been doing it for years,the poeple you saw on the tapes you have,does it say there injury and how long they have been hurt?did it really seem like to you that he can make a difference?just even have felling would be worth 30,000,and not be excluded from any other trials,there is so many poeple that went on spinewire and no one did this treatment,i guess iam just trying to get more information to help my friends and me and to give them a reason to get this money together,thanks jeff

[Birde]

overtheline3- The video that we viewed seemed as though it was the real thing...I have no idea how they could fake that. The individual(s) were using a walker. One particular individual was getting out of a car, when she did this, you could see that her legs were wobbling all over at first as she got up to the walker. Her walking was primative and slow. She was walking, not pulling her legs along or swivling her hips. She had her elbows bent and she was not putting all her weight on the arms. She had the boots on that came below the knees. She bent her knees as she walked, one foot in front of the other. Much like an older person with a walker. Again, slow and primative steps. There were posts regarding Dr. Kao at cando.com, I looked and read them all. Just recently it would seem that more individuals are willing to partake in trials, and what some refer to as alternative treatments or therapies. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Birde]

http://runningbear.com/main/Ed/text/Main-Page.html

http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Birde]

WSAZ TV (Huntington-Charleston, WV) TV station
called and wants to do a story on Ed Paige ( going to Ecuador for procedure w/ Kao. I think it is schedualed for tomorrow. Just in case you are in that area. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

[giambjj]

Dr. Kao was in South Georgia yesterday, and will meet with my son Jake today in Auburn, Al. Since I am a College Professor, I will grill him with many questions of interest to the people in this forum. Will keep you informed.

[Birde]

I received the following email concerning Dr. Kao that I have forwarded to you for your reference.
Laurance Johnston
Traci had Dr. Kao's surgery in Argentina in 1998.
He took sural nerves from the back of her legs
and using Schwann cells grafted the nerves where
the injury is at (C-7). Hyperbaric (sp) chamber sessions
were done daily for 14 days so the nerve graft would
not die. Traci gets 1/33cm of nerve regeneration per
month and with 3cm of damage it will take approx.
7 1/5 yrs. to bridge the gap. Her spinal cord was
crushed not severed and the injury is NOT completely
across the width of the cord.

Traci is making inprovements and is taking assisted
steps with knee boots (special made). We are checking
into the Israel treatments that Melissa Holley had, but
because Traci is considered "cronic" by everyone except
Dr. Kao, we may not be accepted. One doctor at Ohio
State, is very interested in Traci for the macrophage
treatment because she has had a nerve graft.
Traci has gained some deep feeling since the nerve graft.
She can feel her butt, feet and lower legs. And recently, a tingling
feeling across her upper abs and up and down the sides of
her trunk. We are very encouraged. Thank you for asking.

Traci's therapy consists of electric-stem, standing, bed exercises
that Dr. Kao prescribed, arm weights, swimming, bounce back, and
ab-doer. She takes bee propolus (sp) for nerve regeneration. I am
always looking for new ways to help her regain as much as possible.

Before the car accident, Traci was on a singing and dancing scholarship
in college. She was the front seat passenger in a roll-over, and the only one hurt.
Had the man behind her been wearing a seat belt, she probably would have
been o.k. We want her to have the life she once knew back.
Carol Bryan

[giambjj]

We just met with Dr. Kao. He stayed about 2+1/2 hours. He examined Jake (a 15 year-old who is 8 months post a complete C4-5 injury from a wrestling accident, www.jake15.com (http://www.jake15.com)) in his bed and made several valuable comments about his injury.
He showed us some new exercise routines and two pieces of equipment to bring back function to his triceps and biceps muscles. He stressed the importance of getting Jake to stand for 1 hour each day inorder to prevent osteoperosis wiht the aid of a standing machine. He examined his X rays and found pieces of bone fragements in the C5 area. He wants us to send him ASAP a new MRI to see if the bone fragments are causing cord compression. After seeing the MRI, he will make a full surgical recommendation to us. We also viewed his video and excerpts from his book on SCI treatment. Dr. Kao believes he can restore more of Jake's upper body functions, bowl regulation, ejactulation ability (very important for a teenage boy)and give him the ability to stand and walk with specialized boots and a walker. His video showed a female teenager with a simliar injury, that has good use of her hands and fingers, and is just learning to walk again. We now have hope, but will wait until, we get back the final word from Dr. Kao. I thanked Dr. Kao, gave him a check for $250 and he left for Orlando. He was with his son and 2 friends, so maybe he is off to see Mickey Mouse, or possibly another patient or two.

Sincerely:

Jake's Dad

[etexley]

jgiambro -- Did Dr. Kao say there is any length of time which would cause his treatment to be less effective?

It seems that there are now biological treatments for SCI which have consistent improvement. Did he say WHY your son would wear "special boots?" Is there some limit on what function can be regenerated? Now if Dr. Kao really treats 80 people a year, I would think he would have data to take his treatment protocol through the FDA approval process, NO?

Something that I found interesting was a post awhile back, where Dr. Kao said that his patient would get "no more improvement" after spinal shock wore off (reflexes had returned.) I'm a year and a half post. I am getting improvement, albeit microscopic. I sit on a stool every day, and record the amount of time I can sit. It get longer every day. I'm T5 complete. When I get good enough in the braces, I'm gonna sell this silly wheelchair.

Eric Texley

[etexley]

Incidentally, have any studies been done on the effect of using Hyperbaric O2 treatments to people immediately post injury? would this help prevent the secondary effects of injury??? i.e. apoptosis, etc.etc.etc

Eric Texley

[James Kelly]

CAROL: I'm glad to hear about Traci's progress. I changed my ISP since last we wrote. It's now "OldDrooler@hcnews.com." Also, through your information I finally was able to speak with Dr. Kao. Thank you once again!

BIRDE: My conversation with Dr. Kao didn't touch on his surgical procedure. In answer to Dr. Young's question, Dr. Kao doesn't seem to use neurotropic growth factors or any regeneration-stimulating agents (such as Inosine, Adenosine, gene therapy, etc.), correct? Also, he appears to not be using precurser cells to repair or replace damaged neurons...is this assumtion also correct? If so, I wonder if his results would reveal less success in treating levels that typically have a high motor neuron density? If so, such an indication may prove to be a factor worth considering before deciding to have this treatment. I believe Massachesetts General Hospital has a website that explains the symptoms of cervical motor neuron damage (myoclonus and spasticity). It would be interesting to ask Dr. Kao what were his results with patients having severe spasticity or clonus prior to surgery. If he has noticed no change in these symptoms, or if these patients have shown less improvement, he may be willing to consider adding a therapeutic element such as autologous stem cells to address neuronal deficits.

Also, do you know if he removes the glial scar?

Just a few thoughts

James Kelly

[giambjj]

Dr. Kao has not promissed us anything until he sees the new MRI. He claims the high boots work kind of like braches, but more appealing to the eye. He did not mentioned at what time post injury that his therapy will no longet work. I beleive that he has worked on people many years psot injury, but I am not aware of there recovery rate. However, he did see that it could take years before Jake could walk or use his hands naturally. The nerve graft grows very slow. He also said that if a new cure came down the road 5 years from now that can regenerate the injuried cord, that it would work as it did before and this surgery should not keep in from recovering.

[mikek]

Jim great questions and on the spasticity issue which is my major concern I will be asking Dr. Kao
when I see him on Monday. I am a T2-3 incomplete
with 50 % feeling and can move my legs but they are always in a state of contracting with severe stiffness. In 1999 I had a baclofen pump installed and that didn't help with the stiffness at all and had it removed 8 months later. I presently only take about 20 mgs of baclofen orally a day.

My understanding on schwann cells they create the myelin sheath for the nueron. I have been an incomplete since 1968 and was walking until I had surgery for a tethered cord in 1998. I think I have a severe myelin deficiency.

Give me any questions, please,

Mike

[Birde]

Here is a response regarding HDO and Dr. Kao's use of it...interesting reading....Dear Lady: (I especially like that part)(LOL!!):p

Thanks very much for your note asking about the use of HDO on Spinal Cord Injury.

Yes, I do know personally Dr. Carl Kao from Taiwan who lives regularly in Washington, and has been doing surgery to correct problems in Spinal Cord Injury all around the world. He has been using HDO after the surgery with great success to be sure that the transplanted Swan Cells he grows from the patient own cells, will stick and adhere to the original cells in the spinal cord channel.


A few years ago he bought one of our Hyperbaric Chambers and donated it to his home land University the Taipei Medical College in Taiwan, and took it there and set it up at a brand new hospital the University had set up. I was invited by Dr. Kao to Taipei and remained there for a couple of weeks, to install the equipment and train the people who was going to be on charge of the equipment.


At that time, he was supposed to perform a couple of Spinal Cord operations in Taiwan, one to a 45 y.o lady who was completely paralyzed since several years ago from a car accident, and a friend medic who had received a gun shot on the back. In that time I suggested Dr. Kao to start HDO before the surgery to prepare the patients in advance and later after the surgery, to keep the HDO treatment, to be absolutely sure of the result of the operation. He accept my suggestion, and started to bring the lady before the surgery, to the Naval and Veteran Chiag Kay Check Hospital, where they had an eight place Dragger Multiplace Chamber. I was able to observe the remarkable effect, on the lady, which after the first four sessions started to move the upper members. In that moment I left Taiwan because I had to go to Stambul in Turkey to set up a couple chambers we had sold too.


For the case of you, I would strongly suggest to start as soon as you can, to come to a Hyperbaric Chamber to perform as much HDO as you can before the surgery ( not less than five sessions, but if it is possible to do ten, or even better twenty it would be great, and with that you would be able to appreciate the effect of HDO ). The best pressure level of treatment before surgery I would recommend is, 7,5 PSIG ( 1,5 ATA ), that is the best point to stimulate the cells on the Central Nervous System ( CNS ). After the surgery I would suggest to go up to 12 PSIG ( 1,8 ATA ) that is the best point to stimulate the immune system to prevent any infection and speed up the healing process.


It appears to me from your note, that you live in Ecuador. We have set up four of our chambers in Quito Ecuador. Three of them are directly in Quito, and one is in San Golqui near by. I can not send you right now the complete addresses of the Doctors who own those chambers because recently I had a big problem with my computer due to a virus, and lost all the information on my Hard Drive, but maybe you could look at the telephone book and find them,. One of them is Dr. Freddy Gonzalez and used to have his chamber at his home office in Quito near the Avenida General Chiriboga , but lately he bought a second one and set both of them at a clinic, I understand if my memory do not fail, it is called Clinica Primavera The other Doctor in San Golqui, is Dr. Aguilera, he had moved recently to a new place but still in San Golqui. He has had that chamber for over nine years now, he was the first one in Ecuador to have a Hyperbaric Chamber and perform HDO. The fourth chamber was brought to Quito some six year ago but really I do not know where it is actually now.


If you want any additional information, please do not hesitate to e mail me, that it would be a pleasure to give you an answer if I can do it. On the mean time I am going to look up if I can be able to pick up again the names and addresses of the chambers in Ecuador to send them to you.


I hope this information can be of any help to you.

Respectfully,


Arturo Martinez Restrepo, M.H.

< armarlife@hotmail.com >

(I will have to write him back and explain that I do not live in Ecuador!)

[Birde]

(James Kelley)- I don't have the answers for you, however, I did forward these questions and concerns of yours to Dr. Kao, I am sure they will be answered as soon as he has the time...I will keep you posted.

[Birde]

Just finalized everything (almost). I leave August 21 and return September 7. The cost for me - (which flexuates between patients, depending on what needs to be done - i.e. tendon transfer, hardware...) is $28,200.oo. That does not include my airfare, but it includes the price of someone staying with me and their meals, laundry...as well as my own. I realize that I am gonna get some "flack" about having this done, but I am prepaired for that too. I know that this is not the cure, I am not dumb! I have researched this for almost 8-9 months. I've read Kao's book, his papers(although I know they are old), talked to over 100 people (either by phone, in person, or via internet), Many had the procedure, some were told they couldn't have it for one reason or another, some were past collegues of Kao, and so on. While this may not be the road for some, I feel it is the right avenue for me. I am not trying to "cram this down anyones throat", or trying to sell this off as the way to go, or even say it's the best choice. I really admire bilby and the others who chose a differant route!! I will keep you all posted, as I plan on bringing the 'ole laptop along!! I am not gonna tell make believe stories, I'll be quite honest, if no results are seen I will let ya know, if I am worse, I will tell you, if I am better or see good results I will let you know...whatever happens I will let ya know.(;o( Unless I die, than I can't tell ya...attempt at humor http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[Carl R]

Keep us posted and thanks for all the information. As I posted on the other forums, someone once told me you make your own luck and defined it as " where talent and opportunity come together ".

[etexley]

Why has no hospital IRB tried to adopt this procdure that Dr. Kao does in the United States? What would be the route which it would have to take to become an approved therapy? If the procedure changes or improves, what would have to be done to integrate these changes? Apparently he has treated more than 500 people with his procedure. As many people here mentioned, he restores function through the quads and hamstrings. Dr. Young??? How could this procedure be refined to resture function completely????

Eric Texley

[Chris Chappell]

I want and hope for anyone who undergoes Dr. Kao's surgery to recover. My only question has been and continues to be is if there have been 500 or so patients (80 per year roughly)who have had this surgery then why hasn't there been more attention paid to this? why aren't former patients shouting from the rooftops about their recovery? If it worked there would be other doctors doing it, right?

A doctor once told me to never rely on a doctor's pitch for any type of surgery. Get a second or third opinion and more importantly talk to former patients and get their testimonials.

I guess, in relation to Dr. Kao's pitch, I would like to hear from 50 or so patients (10%)(medical records, etc.)about their specific function / recovery before and after.

We all want it to work but are we making this decision logically or out of desperation? Or is the expectation that if I get anything back (minimal function) that it is worth it? Does anyone else echo these same thoughts, considerations?

[Carl R]

those who are willing to take the risk and go forward with experimental treatments. I am somewhat skeptical of Dr.Kao's work for the simple fact that he has not published results.

[etexley]

I don't know about publications. I do know he co-authored a book with Richard Bunge "Spinal Cord Reconstruction" which detailed repair techniques which they used on more than 250 dogs...I would assume that he might publish abroad.

As far as "experimental," I think that Dr. Kao is probably clinical, NOT experimental. He has treated more than 500 patients...! And he can very reliably predict how much recovery they will get. As far as "hearing about him" if he is doing 80 surgeries a YEAR, I don't think he needs any more business than he already has.

Also, it is my understanding that he did some treatments at Georgetown. But the patients insurances wouldn't cover it. And it amounted to like $150000.

Eric Texley

[Wise Young]

Carl Kao use to do animal experiments and he was very good. Yes, he did co-author a book in 1980 about reconstructing the spinal cord. I went to that meeting and met him in Las Vegas, 1979. I am not sure what happened at Georgetown but he had gotten into a disagreement with the university because he was transplanting peripheral nerves into the spinal cord of patients there.

Wise.

[bill j.]

Years ago, Dr. Kao was disciplined in the state of Washington and was, I believe, prohibited from doing further operations there. He was apparently trying to find a place in the United States to do his operations. You can contact the state authorities in Washington and they will send you the papers on his disciplinary action along with an exact description of the procedure he did. I read the papers, but much of it was in medical jargon I did not understand.

I have met Dr. Kao and found him to be very personable and likeable and seemed very sincere to me. I think he probably moved his operations to other countries because they are not approved for spinal repair in the United States. I decided not to have his operations because of lack of scientific evidence that there would be any improvement. I know some people got a little better and regained some level of functions, but others have not improved at all. Whether improvement came from nerve regeneration or decompression of the cord, I don't know. I speculate it came from decompression because in all cases of improvement, I believe, improvement has been quit limited.

Dr. Kao is somewhat of a maverick in going against scientific protocol. I don't know if this is good or bad, but he obviously believes in what he is doing and has brought improvement to some people.

[Birde]

"A doctor once told me to never rely on a doctor's pitch for any type of surgery. Get a second or third opinion and more importantly talk to former patients and get their testimonials." Those are wise words, I wish I had taken that advice at the time of my injury, the hospital and doctor(s) really did a number on me. Again 3 months after that at the second hospital, I wish I had gone and got some more testimonials...as the same sort of thing happened yet again! Now 3 doctors besides Kao say (all agree) that I need to have another operation to straighten the spine or I will be a slumped over hunchback the rest of my life.

"I guess, in relation to Dr. Kao's pitch, I would like to hear from 50 or so patients (10%)(medical records, etc.)about their specific function / recovery before and after." Again I will say that I spoke to well over 100 past patients of Kao's, and some did go to the local papers and sing praises of Kao...it is not the fault of the patients or of Kao's that the press does not do a better job with the reporting of the story! I spoke to these patients well before I ever spoke to Kao! In some cases I went back, after meeting with Kao, and talked to these people again. It's important to understand that Kao does not travel the world to pitch his procedure! He is not some traveling side show faith healer! I went to him.

"We all want it to work but are we making this decision logically or out of desperation? Or is the expectation that if I get anything back (minimal function) that it is worth it? Does anyone else echo these same thoughts, considerations? " Many echo the same thoughts and considerations as you! In fact, it is my opinion that is why the is no cure to date or very many therapies in regards to SCI! For years we have been told the cure is near, 5-10 years away! They have been saying that for 15 years! Little did we know that 5-10 years meant add the two numbers (which is 15) and multiply that by forever! WAKE UP!! The cure is not going to knock on your door! We are taught from the onset of our injury to live with it! We are told to make friends with the wc. We are taught ways to survive with our disability. We are taught to be productive cripples! Nothing is offered! When you have cancer or aids, or and organ failure...you are given drugs, radiation, trials are in place, things are offered and they are not told to "live with it, things could be worse". SCI people are! We do not demand a cure or therapies. Everyone else does! I am not going to sit in this chair and accept the life sentance that was given to me. The cure is out there. Just because the U.S. is not on top of it, does not mean that there is nothing that we can try or look into. LOOK AROUND PEOPLE...Taiwan, Russia, Ecuador, Israel... the U.S. is lagging, what they try has and is being tried already in other countries. "monkey-see-monkey-do". I have done my homework, talked to the right people, read the book(s), read the papers...I am ready to try this, if you don't think it's worth it, PLEASE DON"T TRY IT! But, don't you put me or anyone else down who are willing to try something other than sit and accept the life sentance that was handed down to us! DON'T YOU DARE!

http://sci.rutgers.edu/forum/images/smilies/mad.gif BTW...Kao can and does operate in the U.S. and did so recently for a SCI individual in Chicago. He can not do the regeneration procedures here in the U.S., no one can, unless it is part of a tightly controlled trial. NEWS FLASH-there ain't too much of that happening in the U.S. in regards to SCI!!!! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[This message was edited by Birde on August 02, 2001 at 10:44 AM.]

[overtheline3]

so bill,so the majority of these poeple that you talked to that had his surgery had little to know return?you and birde are talking to different dirrections about this surgery

[etexley]

I'll tell you all something....note that Melissa Holley is ambulating in KAFOs now, regardless of the fact she has leg extension. Kao has quads many years post injury in what is the equivelant of an AFO.

I don't consider bowel, bladder, and sexual function "minimal."

He has a procedure that DOES work. And he is quite clearly clinical, NOT experimental given the number of patients he has worked with with success.

Eric Texley

[Carl R]

Birde, As I mentioned earlier, I have nothing but respect for your decision and believe you are very brave to undergo Dr Kao's treatment.

And while I am skeptical, I do plan on having Dr Kao come and visit me to get his opinion of my injury. Thanks for all of your research.

[overtheline3]

for a injury not to high and under three inches not severed,are the majority of theses poeple at least getting back there bowel,blatter,and sexual fuctions?the feeling of these things?that alone would be incrediable step forward

[Chris Chappell]

birde, nobody is putting down your decision. Lighten up. Like I said in the beginning of my post. I hope you get as much return as you hope for.

I think we're all awake enough to recognize that there are other options, Russia, Taiwan etc. My point was birde that to date none of these therapies clinical or experimental has worked conclusively and consistently and therefore my question of basically is it worth the risk? You think it is. Good luck. But get off your attitude that the rest of us are just sitting around waiting for something that in your mind isn't going to "knock on our door".

Some of us analyze these decisions differently and you shouldn't condemn us for it. Also, just because we're not as emotionally charged as your posts often reflect doesn't mean we care any less or don't want a cure as bad as you do.

My apologies for showing any skepticism in Dr. Kao or your research. Looking forward though to your honest assessment of whether or not you improve.

[etexley]

you know, with a little work on a search engine, i don't see how ANYONE can claim a LACK of publications for Dr. Kao. In his cirriculum vitae ALONE he has nearly 100 publications. There are MANY MANY MANY pages of hits when you type in kao and sural nerve graft..etc.etc.etc. given his work with subjects, this guy has probably done more for our progress towards a cure than anyone ALIVE.

Eric Texley

[Carl R]

My skepticism is that the articles have not been published in medical journals for peer review.

Who knows though, the good doctor may be just way ahead his time.

[Wise Young]

Here is Dr. Kao's curriculum vitae, where he trained, where he has been, his publications, and also his birthdate.

[Birde]

Dr. Kao not only has published a multitude of papers that were in fact published in medical journals for peer review, but also has spoke at a number of synposiums(meetings) as well as taught and lectured at numerous colleges. He has wrote a book and is in the process of another. The last published article I found was 1996...not all that long ago, he has some small articles and abstracts but they are from Taiwan and South America, and I am not too good at either launguage. The last one out of Taiwan that I found was titled: Nerve and Ometum Graft in Post-Traumatic Spinal Cord Cavitation(Taipei Medical College and National Taiwan University) VD-1-1D 443.He presented this at the 9th Asian-Australasian Congress of Neurological Surgery. Dr. Kao does not feel that he must defend himself. He has said that just because an article or study or abstract is published, still it is often rejected by ones peers and not given the proper attention it deserves, thus he will write it all at one time in a book. He is not concerned with what people may say or think. Here is the link to his curriculum Vitae: http://www.digisys.net/users/petemoss/kao.htm

[Wise Young]

Here is another site describing Carl Kao's work: http://www.runningbear.com/main/Ed/text/urls/Dr.CarlKao.html

[bilby]

Birde- I wish you the best. Hopefully, your next anniversary won't be so gloomy.

bill

[Sue Pendleton]

I'm still curious about how Dr Kao feels about doing a OEG autograft transplant but after reading his CV; I think I know someone who did his internship together with Dr Kao. Think I'll ask him.

Has anyone else asked their neurologists or neurosurgeons about OEG tranplants?

[Birde]

http://www.cureparalysis.org/spine/

[Birde]

http://www.cincypost.com/2001/jul/06/surg070601.html Silverton man hopes to patch up wounds first, then painful life
By Ken Wilson, Post staff reporter


Rather than accept that he will need a wheelchair the rest of his life, Gregory Perry is willing to take a chance on a surgery some medical professionals consider highly experimental.

In February 1996, the 28-year-old Silverton man was shot twice. One bullet came within a quarter inch of his heart, the other damaged his spinal cord, leaving him paralyzed from the chest down.

Almost 10 years earlier, Perry was stabbed 18 times by three men outside the apartment of a former girlfriend. That attack left him with nerve damage in both arms.

''Sometimes we get depressed thinking about what has happened,'' said Perry's mother, Linda Edwards. ''He'll say, 'Mom, I don't bother anybody, why do these things happen to me'?

''I'll say, 'If you would have been a drug dealer on the corner and got shot, you would have been dead ... and God wouldn't have a chance to work in your life.' ''

Her son prefers not to dwell on the shooting. Mrs. Edwards said her son was picking up a co-worker at an apartment complex in Mount Airy when he ran into an ex-girlfriend. A confrontation followed with the woman's boyfriend, who shot Perry.

Both son and mother stand firm in their belief spiritual intervention led them to a neurosurgeon who will perform a spinal construction surgery with nerve implantion on Perry in August.

Perry is trying to raise $27,000 for the procedure to be performed by Dr. Carl Kao, who operates a Spinal Cord Clinic in Washington, D.C. The surgery has not been approved in the United States, so it will be done in Quito, Ecuador.

Members of Mount Zion Baptist Church of Woodlawn have established a fund to help with medical expenses. The church, which has raised $3,000, pledged to contribute whatever money Perry can't raise by July 20.

''We'll chip in the rest to make sure he can have the surgery,'' said church member Gina Ruffin-Moore, who's coordinating efforts.

''Greg was the first person to be baptized in a wheelchair at our church,'' Ms. Ruffin-Moore said. ''He told us about how he wanted to walk again and he found this doctor who might help. He is so determined. Members did research on this doctor and decided to help.''

Perry has sold baked goods and cookbooks to raise money while his mother held a skating party.

Perry spent countless hours researching his condition and doctors that might help before stumbling on Dr. Kao, who's originally from Taiwan.

''Greg didn't want to adapt or get used to a wheelchair,'' Mrs. Edwards said. ''He wanted to walk.'' The optimum outcome of Perry's surgery would be to restore sensation to reach his mid-thighs and to walk again.


Publication date: 07-06-01 *****************************Related story:
It's rush-hour traffic outside. From his first-floor room in the 6700 block of Highland Avenue in Silverton, Gregory Perry can hear it humming down Montgomery Road.

He would like to be a part of the rush, heading for a job, or just outside driving around.

But he can't. He has a bigger job with his mind, body and spirit.

Mr. Perry, 28, is paralyzed from his chest down because of a spinal-cord injury from a gunshot wound five years ago.

He was attacked on the way to work Feb. 8, 1996. He doesn't remember much about the attack, except that he was shot twice, once in the chest, an inch from his heart, and another bullet entered his abdomen, damaging his spinal cord. He still has use of his arms.

"I have blotted it out of my mind," he said. "I am 10 steps ahead of that incident."

Six days a week for 10 hours, Mr. Perry puts himself through grueling physical therapy. It's like a full-time job for him, because he is determined to walk again.

"I work on my entire body, mind and spirit," he said. "I refuse to live my life confined to a wheelchair."

He is also working against a deadline to raise $30,000 by July 20 to pay for an operation he believes will help him walk again. He is scheduled to fly to Quito, Ecuador, on Aug. 13, where Dr. Carl C. Kao, a neurosurgeon who directs a spinal cord clinic in Washington, D.C., will perform reconstructive surgery through nerve implantation. This surgery has not been approved by the U.S. government.

But it is one piece of hope Mr. Perry holds on to.

Dr. Kao came to Cincinnati in May to meet Mr. Perry. He explained by telephone last week that the bullet through Mr. Perry's abdomen did not damage his spine, but the heat and vibration from the bullet caused a 2-inch collapse in his spinal cord.

He said inside the collapsed spinal cord is an empty space which expands and causes nerve fibers of the spinal cord to be disrupted causing the paralysis.

"The surgery is to implant sural nerve and schwann cells into this empty space and wrap the spinal cord," he said.

Dr. Kao said after the implantation, the nerve fibers of the spinal cord can be reconnected and blood supply restored.

He thinks Mr. Perry can regain sensation to the mid-thigh area, gain control of bowel and bladder functions, and walk with a pair of orthopedic boots and a walker.

"We have done about 500 of this type of surgery and about 70 percent have been able to walk with the special boots and walker," Dr. Kao said.

Mr. Perry is confident that he will walk again.

"I had faith from day one," he said. "I know God would see me through."

Before his injury, Mr. Perry was a car detailer and a perfume salesman.

"I think this whole incident has made him strong, spiritually," said Linda Edwards, his mother. "He went back to church and was baptized in his wheelchair."

The Mount Zion Baptist Church of Woodlawn, where Mr. Perry is a member, has set up a special fund to help pay for the procedure. Church members have raised $3,000.

Donations can be made to: Mount Zion Baptist Church of Woodlawn Benevolence Fund, 10180 Woodlawn Blvd., Cincinnati, Ohio 45215.

[This message was edited by Birde on August 05, 2001 at 05:09 PM.]

[This message was edited by Birde on August 05, 2001 at 05:50 PM.]

[etexley]

My only question would be...are there better bridges besides the peripheral nerve? Would Neurogel be a better bridge???

Eric Texley

[Wise Young]

Bridging the spinal cord with peripheral nerves is more complicated and more simple than most of us think.

When the peripheral nerve is transplanted, the axons in the peripheral nerve obviously die (the nerves contain axons that have been cut off from their cell bodies) but the Schwann cells remain. In the peripheral nerve distal to the injury site, Schwann cells transform (or they may come from some other cells) into macrophage-like cells when the axons that they once myelinated die. These cells rapidly clean up the myelin debris (which may inhibit axonal growth). When the axons grow back into the area, the Schwann cells then myelinate them.

The above is the theory underlying the beneficial effects of Schwann cells in peripheral nerve. The peripheral nerve can regenerate to some extent, although it is not as good as most people assume that it is. Most of the time only a small proportion of the peripheral nerve will regenerate.

In the spinal cord, oligodendroglia myelinate the axons. They are very different cells. First, unlike the Schwann cell which myelinates only one axon, an oligodendroglial cell myelinates as many as 20 axons. When axons die, the oligodendroglial cells don't transform (or at least we don't think so) into macrophages. As long as there are still some axons that the oligodendroglial cell is still myelinating, the cell remains. In fact, the axons die and the myelin sheath often remains for some time. For example, if you look at a degenerating white matter tract in the spinal cord, you often see hollow myelin cylinders with no axons in them. However, if enough of the axons die, the oligodendroglial cells undergo apoptosis (programmed cell death). The degenerating white matter is invaded by macrophages that clear out the dying oligodendroglia and myelin fragments. This process is called Wallerian degeneration and often takes place many weeks after injury.

The experience of many laboratories have shown that bridging the gap alone may not be enough. The Bunges have shown this very clearly in their model where they use bridges made of Schwann cells embedded in a biomaterial called matrigel. Matrigel was developed by Cytotherapeutics and was designed to contain all the goodies that axons love to grow on. It is probably similar to Neurogel. What they found was that axons dearly love to grow into the bridge but they were very reluctant to grow out of the bridge.

The problem became not one of bridging the spinal cord but getting the axons to grow out of the bridge. Henreich Cheng suggested a solution to this problem by doing specific nerve bridges from white matter to gray matter, reasoning that the reason why the axons don't like to grow out of the bridge is because they don't like to go into white matter containing Nogo and other axon-growth inhibitors. In addition, he applied a growth factor called acidic fibroblast growth factor. Cheng, Cao, and Olson published a paper in 1996 reporting the first successful peripheral nerve bridging of transected rat spinal cords.

Therefore, just throwing a peripheral nerve or some neurogel into the syrinx is unlikely to bridge the spinal cord or solve the problem of getting the axons across the injury site. On the other hand, the Schwann cells from the peripheral nerves may very well proliferate and myelinate axons in the vicinity. We have long known that transplanted Schwann cells will myelinate axons in the spinal cord. In general, because the central nervous system consider Schwann cells a part of othe peripheral nervous system, astrocytes tend to wall off the Schwann cells and keep them from migrating in the system. So, the Schwann cells will only myelinate the axons close to the transplantation site.

One other thing... there is a great deal of work looking at other cells as potential bridging cells. These of course include the olfactory ensheathing glial cells (which sometimes have been called the Schwann cells of the CNS), radial glial cells, tanicytes, and other specialized glial cells.

Wise.

[Sue Pendleton]

I understood that what Dr Mary Bunge and Naomi Kleitman are now working on is a combination of olfactory ensheathing glial cells and Schwann cells to bridge the gap. From what I read it sounded like a very, hmmmmm, not really disappointing butunexpected outcome for Dr Bunge. I'm trying to remember the article........I think they found that instead of OEGc's helping the Schwann cells along it turned out that the Schwann cells helped the OEGc's along. After so many years working dilligently on Schwann cells I imagine Dr Bunge must have wanted to throw a microscope or two at these findings. http://sci.rutgers.edu/forum/images/smilies/eek.gif

[Birde]

http://www.clinicalaprimavera.com/ (click on Bienvenido)*** OR*** http://www.clinicalaprimavera.com/espanol/index.htm Everything is in Spanish and the English version doesn't seem to work, however if you bookmark the site and go to: http://babel.altavista.com/translate.dyn?urltext=http://www.apromaelaz io.org/aipemmei39.html&language=it (http://babel.altavista.com/translate.dyn?urltext=http://www.apromaelazio.org/aipemmei39.html&language=it) and put in what you want translated (spanish to english) it will work.

[This message was edited by Birde on August 07, 2001 at 12:51 PM.]

[Wise Young]

Thanks. I am posting a copy of the information that you provide in the Trials Forum as well, so that people don't have to scroll through so many postings to find the information. Wise.

[kilgore]

"When the peripheral nerve is transplanted, the axons in the peripheral nerve obviously die..."

I recall experiments in which live peripheral nerves (still attached to a back muscle, for example) were stuck into the spinal cord injury site and coaxed into regenerating into the cord stump. Are the axons dead in this peripheral nerve, too? Did they have much luck with this?

How about this: graft a live peripheral nerve into each side of the injury, then cut the peripheral nerves and graft them together. If one end of peripheral nerve tissue is always connected to live tissue, it might stay alive and keep its grafting ability.

[Wise Young]

Sorry, I don't explain so well.

The neurons that give rise to the axons do not live in the peripheral nerve. They are either motor axons which come from motoneurons situated in the spinal cord or sensory axons that come from dorsal root sensory ganglia that are little cluster of neurons attached to the nerve roots.

When you cut out a section of peripheral nerve, the axons are cut off from their cell bodies. It is surprising how long they do live, however. You can isolate a nerve and the axons continue to conduct action potentials for many hours. They all eventually die. It doesn't matter how well you oxygenate or maintain the nerve segment, the axons die.

What remains in an isolated nerve are the periaxonal support and Schwann cells. In many studies now, peripheral nerve segments support axonal growth. Although many substitute grafting material have been developed and proposed, I know of nothing that is better than peripheral nerve for supporting axonal growth.

So, when Carl Kao transplants sural nerve segments into the spinal cord, I believe that it is a source of Schwann cells and also may provide an environment that axons like to grow in. But, as I pointed out earlier, the problem is not to get the axons to grow into the peripheral nerve segment but getting them to grow out against and all the way to their original targets.

Wise.

[Birde]

We met with a gentleman and his wife yesterday that had this procedure by Dr. Kao about 1 1/2 years ago. We had spoke to him on the phone a few times but he invited us to his home so we could see for ourselves his progress. He showed us his video of the operation...not the entire operation, as that was about 9 hours, just the part that the sural nerve was used to bridge the gap and the schwann cells inserted, the omentum was placed in.... Quite interesting. His level is/was T8. He is able to tell when he has to go to the bathroom, however he needs to cath still. He can get out of his wc and stand unassisted for the most part(without any boots) like to get up to the counter. He is walking with the boots and walker(which is made of steel not like here...its a heavy duty thing!) He still relys on his wc but can and does get around his home with the boots and walker...and he is not dragging his body around or swiveling to move...the legs are bending and moving. Many small scars from the procedure...back(1), stomach(1), knee pits-back of knees(2), ankles(2), upper thighs(2). They are not real big and Kao did a good job with them...not too noticable...in fact his back scar looks better than what it had looked before the procedure(from the pictures he showed us). He was happy with the progress and said that it was still early. He is 60 years old by the way. We were impressed. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[etexley]

I'm curious about something...I spoke with another gentleman yesterday who had the procedure. He is urinating on his own. He is getting sensation down to the bottoms of his feet. He indicated that initially when the surgery was first done, he regressed somewhat.

What is the likelihood of getting worse with a procedure like this one ? (myletomy?)

Eric Texley

[overtheline3]

dr.young,so is dr.kao getting these axons to grow out of the injury?what is he doing that is making this happen?

[Birde]

Eric, when we spoke to this gentleman, he also said that we need to be prepaired for a regression of sorts after the operation, he said that Dr. Kao does not really bring this up and he feels it is important for everyone to know this as many have had the same thing occur. He said it lasts about a month...it would seem that he had some feelings/sensations below the injury level before the procedure and after he returned home those seemed to be gone, he was mortified to say the least...thinking that perhaps he was "more paralyzed...just my luck" he said! A call to Dr. Kao eased his mind somewhat, as he explained many had the same experiances, it will get better, be patient. Within a few wks. to a month things started getting back to what they were and better after that...Until I get to talk to Dr. Kao (who is already in Ecuador) I can't ask why this happens. The first of his 12 patients leave today ~ Gregory Perry~ and Ed Paige leaves on Tuesday. I think Gregs operation is on Monday. This gentleman we spoke to said that although he does not have full feeling to his feet he has sensations to his feet, somedays more than others. HMMMM, wonder why some days its better than others and why there seems to be a regretion of sorts after the operation...

[giambjj]

Birdie:

I just talked to Dr. Kao. He is in his DC office and awaiting my son's MRI by Fed Exp. http://sci.rutgers.edu/forum/images/smilies/cool.gif

[etexley]

The thing is...this is a MAJOR surgery. How many surgeries like that can a person get in their lifetime? and to my knowledge nobody has recovered completely from the operation.

Use your best judgement before you let someone do something like this...a "cure" for this stupid condition might be here already, but as a combination of existing therapies. Don't be someone's lab animal...

Eric Texley

[Birde]

Eric, INDEED! This is MAJOR SURGERY! Again, I need to let you and everyone else know that I am not trying to push this on anyone and I would advise not to run to the phone and just call Dr. Kao on a wimm! I took 8(+/-) months checking into this as well as other things. This may not be for everyone, and that's fine. Dr. Kao will tell you straight out...A) if he feels that he may be able to offer any type of functional recovery or sensory recovery. He will tell you and has told others, if he feels that this will not offer much for you. B) he will tell you that if you are not willing to work towards this {i.e. therapy, with a positive mind set} than there is no reason for him to work towards this and no reason for you to waste your money and time. C)This is not the cure...he will be honest about that, this may offer you a more quality filled life and more control over your life. This will not affect your chances in the future when a cure does come. I respect your oppinion and the reasons for it. I admire you and others for being able to have so much faith that the worlds researchers will find this cure soon, and to be able to wait for it. Here's the thing, almost every researcher, doctor, SCI individual...they all agree for the most part, that the cure WILL not be just ONE SINGLE thing (no one magic pill, no single therapy, no single procedure...). It WILL BE a combonation of things(therapies, procedures, meds..). Now I realize that many may scoff at this, but bare with me, WHAT IF, this procedure is part of the cure? I'm not living in a fantasy land...MANY are doing exactly what Kao is doing only with a differant twist to it...the Miami Center is researching this, Dr. Cheng is doing some of this, Dr. Rafeal in Mexico is doing some of this, as well as countless others looking into and researching much of these ideas. It's a long shot perhaps, but just maybe I will be one step ahead when the cure comes...Maybe I will be one step behind...I am not sure nor are you. I have thought about this, I have read about this, I have done my homework on this. The thing about being a lab rat is that even when the cure comes...someone has to be the lab rat ( alot of someones have to be the lab rat), or we will never see the cure at all.

[etexley]

...Dr. Kao gave me the best physical examination anyone has ever given me in about 10 minutes. For a year and four months, I've been told by the whole world (except by Dr. Brucker) that my injury was complete. Dr. Kao found a muscle, (which I ASKED about in inpatient therapy in Miami, mind you) and SHOWED me on a colorable muslce atlas where it was. We then looked it up on the internet. It is innervated FAR below my injury site. Yet the "expert" physical therapist I had told me repeatedly that it was innervated above my injury site, and I was complete...

Don't these people have a qualifying exam or something? My therapist couldn't even pop a wheelie in a chair... Why should somebody who can't pop a wheelie be teaching me how to pop wheelies??? And in the age of ADA, WHAT IS THE POINT in teaching curbs??? Athletic stunt?

Eric Texley

[Birde]

Ed Paige and his companion Teddy Lancaster will be leaving for Ecuador Tuesday to have this procedure. Perhaps you guys can all say a prayer or two for him and maybe wish him the best! His web page is: http://runningbear.com/main/Ed/text/Main-Page.html

Teddy's email is: Teddy@runningbear.com I'm sure Teddy will keep everyone updated on the web page, she plans to bring a laptop too!

[Birde]

It would seem that the Discovery channel is interested in doing a special show on nerve transplants/regeneration and are calling Dr. Kao in Ecuador, to see if they might be able to bring a crew down there. Just got off the phone with them yesterday.

[Birde]

We finally arrived at 1AM...TIRED!!!

We had to change planes in Washington DC. A real hassle for someone in
a wheelchair. They transfer the person to THEIR wheelchair (we packed
up Ed's new one in a BIG cardboard box and sent it with baggage). To
get on the plane, he is transferred to an "aisle" chair and have to
CARRY him in it onto the plane. Then they have to LIFT him out of the
aisle chair into a seat. Time-consuming and I worried about their
experience. We managed with no problems, tho.

The flight leaving DC was delayed, something on one of the instrument
panels was not working, so their techs got a new part which still did
not fix the problem. Here we sit for an hour knowing we only have two
hours before boarding in Miami for Quito.

Then they told everyone with connecting flight to move to another
plane. Of course, instead of being first, Ed was last...they had him
half way down the plan aisle and then they announced the instrument
panel problem was fixed. So, 75 minutes late, we leave DC.

To add to the hassle, when we arrived in Miami, no gates were available,
so we sat on the runway waiting our turn. Our flight to Quite was
scheduled to leave from Gate B-12 at 7:10 PM. At 7 PM, we are told our
plane (from DC) was was to be the next plane IN to gate B-12 after the
current one left. HEY, that's OUR flight!!!

I was tired and cranky and worried. I was NOT prepared to take care of
Ed in a hotel overnight. I begged and pleaded and something worked.
Our plane was given gate B-6 and Ed was whisked to gate B-12 (half and
hour late) and we got in FIRST CLASS!!!! American Airlines said they do
NOT upgrade without payment, but I think it was easier for them to get
Ed into the bigger seats closer to the front.

Never having flown first class was interesting. Instead of paper cups,
there were glasses. Instead of plastic trays for food, there were mimi
table cloths, cloth napkins, real china and glassware and you are served
one course at a time.

Arrival in Ecuador was as normal as could be expected. Long lines at
Customs, hardly anyone who speaks english, but a handful of $1.00 bills
helped. Funny, American Airlines did not tell us about or give us entry
forms to fill out, so that was another delay.

Thank goodness ALL 6 of our bags and boxes arrived at the same time. It
took two bellboys to whisk us outside where a lovely lady, Patricia" met
us and escorted Ed and I to their van where everything was transferred
with MANY helpers (too many perhaps). In less than an hour, Ed wa sin
bed and I was sitting in their "smoking room" (my first cigarette in 12
hours) to fill out paperwork.

I was glad to get into bed. We woke up early (we'll need a nap later"
and while I was cuddled with Ed (one of the RARE moments we can hug
without his brace), Dr. kA came in to greet us. He was very please at
Ed's condition (he does look and IS MUCH healthier than 7 weeks ago when
Dr. kA met him). He gave his regrets that they would have to shave off
his beard.......

We have met some of the families of several other patients. The
hospital is OK, very busy, again, too many helpers ALL wanting to help.
Everyone VERY friendly.

More this evening.....(along with photos).

Off to local hospital for some special x-rays. In the morning
(Thursday) they are taking us to the Equator. Ed's ONLY chance to
tour....
--
Teddy Lancaster

In Ecuador until September 4th....

[Birde]

Greg, a 26 year old man from Cincinnati had surgery Monday by Dr. Kao.
Tonight, he moved one of his feet, the first time in several
years...(just TWO days after surgery!!!).

Much talk among the other patients' families. We are learning a LOT and convinced MORE THAN EVER that this surgery,
the ONLY one of it's kind (other than the doctors in China), is the answer not only for Ed, but for a great deal
many others.

VERY tired, still. Tests and check-ups by many doctors. ALL of home are
VERY warm, kind and caring and ALL with a smile and a BIG welcome for
BOTH of us.

I took more pictures today but am too tired to get them posted. I
promise in a day or so I will.
--
Teddy Lancaster

[Birde]

The moment of truth, so to speak, is almost here. Dr. Kao reviewed all
Ed's x-rays and MRI's yesterday. Today, he had a consultation with us
which included Dr. Alarcon, the general surgeon, the assistant neuro
surgeon Dr. Guapa(sp). The news is very good.

Ed has complained of weakness on his right side, including his jaw, his
arms, and inability to move his neck from left to right. Dr. Kao had
asked that Ed have an MRI of his brain with in WV. Ed's brain has
absolutely no sign of ANY injury. So far the PT people and the
physiatrist only attempted ultra-sound on Ed's muscles. Dr. Kao has, to
his and our satisfaction, explained this weakness and loss of mobility.
He attributes it to the fact that the spinal cord itself is being "held"
by the compression of the bones from the spine. This kept the spinal
cord to not have its natural "flexion", hence, the immobility of his
neck. So, ultra-sound therapy was not going to do any good. Freeing up
the compression on his spinal cord will. Although Dr. Kao limited his
"agreement" with Ed to sensation to the knees as well as his regaining
bowel and bladder function, Dr. Kao is very pleased with the prospects
for Ed's future possibilities. (I.E. He feels his estimate is very
conservative.)

We feel very fortunate in having found Dr. Kao, Barbara Devine and this
facility. I would never see a neurosurgeon anywhere in our experience
voluntarily wheel a patient from the cafeteria to his room, to assist in
his transfers, to coordinate his meals, to attend to every detail that
is normally left to nurses. These people hold their patients hands, ask
us to express our every concern, go over every step of the procedures in
detail from the readings of the x-rays and MRIs, to the actual surgery
and finally through not only the recovery, but to be right at your side
throughout the therapy during your 2 week stay.

Ed's spine may or may not need to have pins. The judgment will be made
after the area is opened up and assessed in detail. I will be allowed
to film and record the voices of the decisions during this period. His
spine indeed has a 30 degree bend. Up to 35 degree is considerate
acceptable and not to hinder him in any way, provided that fusion is
complete. He was x-rayed in various positions to determine if the spine
had movement by the break, it did not. This indicates that there is
probably no need for the pins, but Dr. Kao will reserve judgment upon
closer inspection during surgery. The addition of the pins will add
about 2 hours to the surgery, already planned for ten hours.

Two other patients have already had surgery since our arrival. John,
the younger one (in his 20's) was a quadriplegic. His had surgery
Wednesday (yesterday). He s already moving his fingers. Greg, the man
from Cincinnati who had a gunshot injury to his spinal cord years ago
(but had no disturbance to his spine), had surgery Monday, he is able to
voluntarily move each of his legs. He is sitting up in bed and eating
normally. Both spend 2.5 hours each day in the hyberbaric chamber, as
will Ed.

It must be the elevation. Neither Ed nor I feel bad, but we are both
constantly tired even though we feel we are getting plenty of sleep. We
were driven to the Equator today. There is a large monument and a small
village of shops and restaurants surrounding it. I took pictures of the
avenue of busts of the mostly Spanish and French explorers who, 300
years ago, marked this spot as the "center of the earth". Of course we
had pictures taken which I will post later.

It was a long (1 hour) bumpy drive through Quito which is 30 miles south
of the Equator from Cumbaya where the clinic is 10 miles east of Quito.
The mountains remind one of California and the western USA. They are
Mostly bare, very steep and it is surprisingly VERY windy. I bought a
great many textile souvenirs at very good prices. ALL hand-made by the
local "indians". I want to go back next week to buy paintings. The
regional art is almost impressionistic, much of it very colorful and I
found it all very pleasing to the eye. Again, all done locally. No
where did anyone sell anything "made in China". The only influence I
see of the "outside world" are the additions of modern conveniences
which have been introduced by American "big business". Shell, Mobil,
Texaco, Goodyear, Pizza Hut, Ace Hardware, McDonalds, Pfizer.

As soon as I have some more time (others want to e-mail home) I will put
photos on the website. PROMISE!!! I have dozens and will send you the
best. Teddy Lancaster

[Birde]

Ed went into surgery at 7 AM this morning. I watched (and taped and
photographed) from 10:30 to 12:30 and then from 1:30 TO 4:30 when he was
closed up.

I cannot imagine ANY US hospital allowing family in the operating room,
much less allowing them to peer through the microscope, stand at the
patients head and watch as well as ask questions. I was indeed
privileged to be able to do so. Dr. Kao is obviously VERY experienced
at what he does and does it with ease, but perfectionism. His
assistants have all been with him for some time so the entire procedure
was coordinated very well and I feel went very smoothly.

I saw Ed is recovery 1/2 hour ago. He is obviously traumatized. It was
a very deep and invasive procedure which included removal of not only
bone fragments, but of part of the "spine of the spine"...(sorry I am
not more medically versed) in order to access the spinal cord.

The spinal cord is thicker than I realized and very well protected
against just about anything except major accidents like Eds. I first
saw the actual compressed bone (which is well fused). Dr. Kao opted NOT
to add pins since this area is already very stable and to insert pins
and screws would involve further and unwarranted trauma as well as more
extended recovery.

I have never seen an actual surgery before, so I have nothing to compare
with. But I did faint when I had my ears pierced, so I was not
surprised when I got very dizzy. I left for maybe 15 minutes to lie
down and decided I had to talk my way into observing as much as I
could. I was fine from then on, except that standing for so many hours
did kill my back. I would do it again in a heartbeat.

For those of you who are squeamish, do not look at the photos on the
website as they show the opened up back and spine, all the way down to
the spinal cord. Yes, it does look like ribs being readied for
BBQ......http://runningbear.com/main/Ed/text/Main-Page.html


I have also posted many of the photos of Quito and the Clinic itself.

Ed will be fine, but his body will be sore for quite awhile. He is on
pain medication and will be as long as necessary. He will have his
first 2.5 hours in the hyberbaric chamber at 1 PM tomorrow (Saturday).

Feel free to e-mail me back with questions. Pass this on to anyone you
feel is interested. This is indeed an experience to share.

P.S. Ed's spirits are very good.....he definitely retains his keen wit
and sense of humor in spite of the surgery.
--
Teddy Lancaster

[Birde]

WSAZ-TV (NBC affiliate, Huntington, WV) is doing an in depth follow-up
story on Ed. I am gaining TONS of knowledge here to share with others who
find themselves in Ed's predicament.

Discovery Channel has already contacted Dr. Kao (while we were in
surgery today) and said they wanted to do a story, promising Dr. Kao
more publicity. It was quite a laugh in the OR as that is NOT one of
Dr. Kao's goals...


--
Teddy Lancaster

[JK]

Birde, Thank you for your story every day.
I am very excited in watching your story and Ed's recovery. I belive the God is watching him too.
Really hope his excellent recovery.
Thanks again.

[Birde]

http://runningbear.com/main/Ed/text/Ecuador/Surgery-1.html ****pictures of Ed's operation at the end of the page click on the next button and the 2cnd set of pictures will pop up. http://runningbear.com/main/Ed/text/Ecuador/Clinic-Inside-1.html ***pictures of the inside of the clinic

[overtheline3]

if dr.kao is going to get so much attention,i wonder if he is planning teaching and showing other docters his procedure?it seems like he is swamped

[Birde]

overtheline3- I think because of the technology today it would seem that Dr. Kao is busier than ever. Search engines are better, the internet, and now the digital cameras make it possible to spread the word quicker. Dr. Kao taught for several years and has done this for quite some time. The media is getting word thanks to the technology as I said before. We will have to see if Dr. Kao allows them to come to Ecuador. http://sci.rutgers.edu/forum/images/smilies/confused.gif

[Birde]

http://runningbear.com/main/Ed/text/8-18-01-photos.html

[Carl R]

are you still going to undergo the procedure? I thought I remember you saying the 24th, but I was not sure? I will not mind at all if you come walking back and say " told you so ". You have definitely done your homework and the updates are appreciated.

[Birde]

carlR...Tuesday is when we leave and Friday the 24th is the operation. Would love to be able to walk back (as you said), will have to take one day at a time though! http://sci.rutgers.edu/forum/images/smilies/wink.gif

[Birde]

Q:> How is Ed feeling?

A:> He sleeps a lot...medications are partly the cause. Important, but so
is eating.

Q:> Is there any pain? If so, what kind and how much,
where
is the pain?

A:> Ed is in NO pain....they have him on some low dose pain medication. I
imagine the incision site would be painful otherwise...

Q:> Any noticable improvements (i.e. like the others can
move
fingers, legs?)

A:> He can feel about an inch lower on his chest and his neck mobility is
almost completely back as well as the weakness in his right arm is
almost gone.

Q:> Any new patients?

A:> Two more arrive tonight.....

Q:> Why can't Ed sit up, you
had
mentioned that another patient had sat up in bed after his operation.

A:> Sitting up will cause spinal headaches. A slight incline is OK after a
day. With no headaches, I imagine he can sit up and eat tomorrow or the
next day.

Q:> What
if anything has Dr. Kao said about the operation...any surprises he
ran into,
good surprises, bad surprises?

A:> The operation revealed good ones for Ed..... Although his compression
was severe, it was limited to 1.5 centimeters. His cord was tethered
and Dr. Kao took care of that, too (that's what gave him back his neck
mobility).

Q:> How did the hyperbaric chamber go?

A:> No problems. Barbara gave Ed muscle relaxers and valium the first day.
Today, Ed is in the chamber with NO valium.

Q:> How are
the others doing?

A:> Greg had some urine in his blood today. I suppose it was from changing
the catheter. Linda, his mother, immediately got Barbara who
immediately had it taken care of... John is able to move his fingers a
bit...

Q:> Explain if you are able, how do you mean that he
was able
to move his leg(s) (Greg)?

A:> I do not know all the details of Greg's injury, but I do know it was not
as severe as John's or Ed's. Movement is VERY limited at this point,
but it is there....

Q:> Did the person who moved fingers have a
tendon
transfer, was he a quad and unable to do so before the operation?

A:> John did not have a tendon transfer that I am aware of. He was a
quad....

Q:> Are
they
all men there having the operations? No woman?

A:> No women yet, so far just the three men.... I understand one or two
women will be here with us...


Q:> Has Ed (or anyone)
noticed
any new sensations or feelings?

A:> So far. I think John has shown the most improvement....

Q:> how is the weather?

A:> The weather is WONDERFUL, but VERY windy.....

Q:>v What kinds of clothes should we bring? A:> You won;t be cold or hot....VERY nice. I put a comforter over me at night and that is all....


Q:> I saw in the pictures that there was a
computer
nook, can you email out on that?

A:> Yes, everyone can use the computer to e-mail anywhere, no charge...


--
Teddy Lancaster

In Ecuador until September 4th....

[This message was edited by Birde on August 19, 2001 at 08:35 PM.]

[Birde]

Now that the surgery is over, it seems like it is all downhill, but it
is not. There are all sorts of little things that have to be done, have
to be watched, and have to be remembered.

Ed must lie on his back for ten days. After a couple, he will be
allowed to partially sit up to eat. In the meantime, I have to feed
him. He can drink juices, water and soups through a straw, but the rest
is up to me handing him a fork or spoonful of whatever.

We are both getting sick of the same old food. I still have not made it
to a store. I want to get brown rice, wheat bread, canned pasta (or ANY
pasta), tofu, bean curd, yogurt, oatmeal, cereal, milk and whatever
other food I think Ed may like and eat, especially food with protein.

Dr. Kao sees him every day. Today, Ed was told that he urine sample
showed a particularly tough bacterial infection, common in patients who
have been in hospitals and facilities of the like. He is on a special
anti-biotic for it. Dr. Kao is insisting that Ed's catheter be clamped
off 6 hours at a time to "train" his bladder. Neither the hospital or
rehab center had made any sincere effort in this matter.

Ed complained of a "hard bump" on his back...it is the site of the
surgery where extra gauze padding has been secured to the area to keep
pressure on the incision site. He has a drain in his back to collect
the excess spinal fluid being produced. This will probably be removed
in a day or so.

Dr. Kao also insists on an "abdominal" binder. Helps circulation by
holding in the gut (Ed has no control here yet). The one we brought
with us from the rehab center was not good enough for Dr. Kao, so he
supplied another.

Everyone in recovery so far has had daily bouts of hiccups. All are
briefly put on a stomach medication. Spasms will be relieved as
sensation slowly comes back, but the abdominal binder seems to
exacerbate them.

A physical therapist visits Ed twice daily for an hour of leg message
each time. His legs are wrapped in ace bandages to prevent phlebitis
and are removed for the hyberbaric chamber an for massage.

Dr. Alaracon, the owner of the clinic (or a relative) has dozens of
paintings everywhere. They are beautifully unique so I took photos of
many of them and am posting them on the website for your enjoyment. I
have not yet asked, but I sure would like to bring one or more home.....

More tomorrow.....

--
Teddy Lancaster

[Birde]

well guys, the countdown begins. We leave tomorrow at 5Am to Chicago, chicago to Miami, Miami to Quito. We are schedualed to get to Quito around 8:30pm. The actual operation is schedualed for Friday, Aug. 24 at 7AM. Pre-op tests and x-rays, and MRIs need to be taken care of before, as well as some exploring Ecuador on our part! We are excited, and really nervous too! We have NEVER been away from our children this far or this long in our lives, that alone is very hard! They (2 boys) start school the day after we leave, and we will not be there for that! http://sci.rutgers.edu/forum/images/smilies/frown.gif We never have been out of the country either! We must live "sheltered lives"?!!! I DON"T "DO" planes well at all, that is going to be pure hell for me! I have had a couple hundred nightmares about that jumbo jet crashing to the ground!!! http://sci.rutgers.edu/forum/images/smilies/eek.gif As I said in past posts, we will try and keep you posted as much as we can, if the "freekin' plane doesn't crash! I bought out the local drug stores supply of dramamine, and perhaps a steady supply of on board cocktails will calm the nerves a bit! I really have been "lucky" to have found all of you, your support through this has been a "God send"! If I have time I will check in tonight, as I know I will be unable to sleep a wink! Thanks! ADIOS AMIGOS! (trying to brush up on the 'ole Spanish) http://sci.rutgers.edu/forum/images/smilies/wink.gif B.T.W. You should be able to keep up to date either here, or at: http://www.jake15.com/, or at: http://runningbear.com/main/Ed/text/Main-Page.html

[This message was edited by Birde on August 20, 2001 at 11:16 AM.]

[Curt Leatherbee]

Keep us up to date with things, and best of luck to you. You are in good hands with Dr. Kao, hopefully you will regain some function.
http://sci.rutgers.edu/forum/images/smilies/smile.gif Curtis

[Wise Young]

Our hearts and prayers go with you.

Wise.

[SKYCO]

I wanted to thank you for your bravery.You have restored my hope in that some day I'll will get out of this chair.I'm to where I can't wait to read your latest post.It is no longer someday,now it's someday soon.
THANK'S AGAIN Steve

[Sue Pendleton]

Good luck down there Birde! You won't crash. And remember, if you or the wife feel tired it's the altitude. You'll adjust. Oh, and while you're exploring keep the valuables hidden...you'll need them to check out. http://sci.rutgers.edu/forum/images/smilies/tongue.gif

Sue<-----pulling for both Birde and Ed

[Birde]

http://runningbear.com/main/Ed/text/8-20-01.html

[giambjj]

Dear Friends:

Please say some prayers also for my 15 year old son, Jake. He is 9 months post C-4,5. We will have the same surgery as Birde's husband next week. We are rushing things a bit faster then we want, because of the complications of syringomeglia. We would have prefered to wait another year post injury, but he is losing not gaining function and sensation. He needs surgery to correct the cavity in his spinal cord, so we prefer to have it all done at one time. Keep up with this progress at www.jake15.com (http://www.jake15.com) or hear at spine wire.

Sincerely:

Joe

[Maceyka]

Good luck to BOTH Jake and Birde! Keep us posted!

Maceyka

[Sue Pendleton]

You have healing thoughts headed towards Jake right now, Joe. Can I ask why your family chose Dr Kao and not someone closer like in Miami for Jake's syringomyelia surgery? And that is a terrific web site you have. Nie way to keep everyone in your extended family and all your friends including us here at CareCure up to date. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[giambjj]

Thanks for your nice comments on the site.My hope is to make a detailed web site, so when the next father is faced with our decisions, he will have some resources to help. First off since Jake is not 18 he would not qualify to enter into the Miami Project. Second we could enter any major University hospital like Miami or UAB where Jake spent 3 months and they could treat the syringomeglia. However, they would not do the other experimental procedures which could lead to Jake walking with the aid of boots and a walker and make him a para instead of a quad. We spent time at UAB, Shepherds, and the Schriner's Hospital in Philly and all said that there was no hope for Jake to walk again during this decade. Only Dr. Kao with his majic touch and gentle ways offered us hope. He said that he had worked on a number of quads with syringo, and they are doing very well now. What would you do, if it was your son? My son is already too tired of being a quad!

Sincerely:

JJG

[antiquity]

Jgiambro,

Have you guys considered Dr. Cheng's nerve growth cocktail or Russia's stem cell injections? Their procedures are much less invasive, risky and require less recuperation time. Maybe you can go to Miami to have to syingo. fixed and then to Taiwan or Russia for the cure therapies. The travelling costs are about the same.

[Sue Pendleton]

I think I'd be doing what you and your son are doing, Joe. I didn't realize that Miami did not work with those under 18. Seems rather rule heavy to me. I mean it's not like teenagers have less need of independence.

[giambjj]

Please keep our whole family in your prayers as we travel to Ecuador on Sunday. If we get there and find out it's not as we expected, or don't feel comfortable with the surgery, we will not have the surgery. We need prayers for discernment to make the best choices for him. For continued information, please see his website at www.jake15.com. (http://www.jake15.com.) We could go for the surgery in Miami to correct the syringomegalia and then somewhere else for cell injections, but we would like to have the whole thing done at one time. We have talked with other patients that have had syringo, and then got the entire treatment from Dr. Kao. They are very satisfied. We are all extremely nervous and can't get sleep at night.

Sincerely:

JJ http://sci.rutgers.edu/forum/images/smilies/confused.gif

[antiquity]

Good luck and best wishes for Jake! http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Wise Young]

I hope everything goes well and let us know. Wise.

[Chris Chappell]

From Birde or Runningbear?

(Are these names from a Kevin Costner movie. Where's Twosox?)

Just a little joke.

signed,
Dances with Wolves

[giambjj]

All are doing well and having some small return in function/ and or sensations.


JJG

[Wise Young]

JJG, that is great! I am so glad that you saw Birde and Ed http://carecure.org/forum/showthread.php?t=14057 and please say hi to her and Ed for us. Wise.

[Birde]

Hello all of you! We have a few minor problems here in Ecuador (none that have any relation with the operation)...our laptop was stolen at the Quito airport the evening we arrived as well as travelers checks!!! So Teddy and Ed have lent me theres today (very nice of them). To get on line is difficult (to say the least) and once on, it is soooo SLOW!!!! We are doing well. The operation was a success and was the longest one this time around (12 1/2 hours)for the Americans. Today Dr. Kao is in surgery with an Ecuadorian with cancer (something about 3 tumors on his spine). This is expected to be a 20 hour operation. There are 2 Ecuadorians who had Dr. Kao's procedure, and 8 Americans this time around. The last operation will be tomorrow. We have leg and foot movement though!!! Jake as you read had a very small movement last night...we have very large, strong, easy to see movement. Toes on both feet can and do move on command, as does the feet and thighs!!! The abdomen is stronger and sensory level has dropped down about an inch on the right side and 2 inches on the left side already!!! B.T.W. I am NOT MARRIED TO ED (as jakes dad had posted!!!!)-Ed is with Teddy Lancaster(his companion)-Jake´s dad was only here a few days and for that reason I can understand that his story was a bit off. The medical attention is good here, 2 Americans have had dental work, one has had hemeroid(sp?) operation, and 2 have had breast surgeries too!!! They all seem pleased. We come home on Friday and at that time I can and will answer all questions. We are very pleased thus far, we will be standing tomorrow and taking the first steps Thursday with the Italian boots!!!!! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

[This message was edited by Birde on September 06, 2001 at 08:14 AM.]

[Steve]

Hello
First, I want to say good luck to Jake. I just read posting about Jake recovery. So exciting to know that he moves his legs.
My question now :
I m c4 complete since 1991 (hockey accident ). I m paralysed shoulders to toes.
I m interested to go to Equador for this surgery.
What are the steps to follow?
How to know if I m a good candidate for that treatment ?
All informations you will give to me, will be largely appreciated.
Thanks a lot

[bilby]

Paul and Curtis-

I was fooled too, I thought Birde was in a wheel chair. Her initial post on this thread states she has a T10 injury. She also on many other occasions, made comments that would lead you to believe she has a sci. I wonder why she never mentioned otherwise?

bill

[Curt Leatherbee]

eom.

[giambjj]

Birdie does not have an injury, her boyfriend, Jim does. They will be home today. She should be back with us soon wiht plenty of good news!

JJG http://sci.rutgers.edu/forum/images/smilies/cool.gif

[rdf]

"His examination was thorough, gentle, and quite professional. He says that I am T10-incomplete as I have voluntary muscle movement below the injury."

These are birde's own words. And she has posted god knows how many similar posts about "her" paralysis. If we take Jake's father at his word that she is indeed not paralyzed, then she has misled all of us, and she should be ashamed of herself. I don't know the reason for her deception, but clearly she has mental difficulties.

[Jeremy]

You know what P.T. Barnum said.

[giambjj]

I am sure Robin will straighten this confusion out in do time. I started the problem by saying that she and Ed (Running Bear) were married, which is not true. She and Jim (T10) are parteners. Both are wonderful people, the kind that you want for close friends. I wish them both nothing but the best! I will miss them a lot!

Sincerely:

JJG

[antiquity]

Maybe both Jim and Birde post under the same name. I remember Birde saying that he was a guy bc someone assumed Birde was a female name.

[rdf]

Maybe so, seneca. If that's true, then I apologize. But don't you think they'd let us know who was posting? It's just confusing as hell, and I don't even know why I care, except many people want information on what is going on down there concerning the therapy. There cannot be any room for ambiguity or falsehoods when somebody is considering an excursion that costs so much, and an operation that is so invasive.

[Scorpion]

Birde's profile says 'Female.' If Birde isn't paralyzed, what are we to make of her discussing her 1 year anniversary?

http://carecure.org/forum/showthread.php?t=28324

Now, as to Birde & Jim posting under the name 'Birde', if that's the case, it's a big oversight on their part not to say who was posting when. (Who's Jim? I'm missing something.) I didn't think about any of this until all this confusion about Birde started, so I did a quick review of Birde's posts here. I haven't found any indication it was anybody other than Birde having the operation, until I read posts where Birde is saying "we" instead of "I". For example: "we have very large, strong, easy to see movement. Toes on both feet can and do move on command, as does the feet and thighs!!! The abdomen is stronger and sensory level has dropped down about an inch on the right side and 2 inches on the left side already!"

I'm not accusing anybody of anything, but I admit this stuff is confusing. Hopefully, Birde can clear this up soon. http://sci.rutgers.edu/forum/images/smilies/confused.gif

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

[giambjj]

maybe she was typing for Jim (T10), because he did not want to type it him selfe, or was too busy?

JJG

[PN]

JJG:

This will be my last post on the issue of Birde. It really is conjecture to write that "maybe she was typing for Jim". This whole situation is awfully strange. Birde was a high volume "poster" on SpineWire and on this new forum, all you have to do is look at her numbers. I think that she( or he) was posting more than Dr. Young, Da, Sue, and some of the others. Now, we are reading her posts and trying to find if she used the words "We, or I". This whole thing is starting to become an "Agatha Christy: Who Done It"mystery.

My theory based upon reading many of her posts is that she came on to SpineWire, went "gangbusters" and many of us responded to her as a female with a spinal cord injury. Birde never gave us any cause to think otherwise and she portrayed herself as a female with an SCI.

I believe that she invented this entire persona of being a woman with a spinal cord injury, and somehow she lost touch with reality. I understand that Birde and Jim have been back in the United States since Friday. I'm fairly certain that they are both reading these posts and are probably trying to figure out a way to explain how all of this has happened. Personally, I think that this is going to be difficult to explain but I am willing to keep my mind open. I also think it is quite possible that we may never hear from Birde again but she may return with a new identity and start posting again.

(For anyone who is seriously thinking about going to see Dr. Kao, there is now an aura of suspicion regarding the work he is doing in Ecuador.)

JJG, you were in Ecuador with them and you claim to be their friend. Why don't you pick up the telephone and ask them "What is going on?"

There is a saying in Washington, D.C. "Delay equals death!" I guess Gary Condit found that out too late.

PN

[rdf]

Well said, Paul. Couldn't agree more.

[Birde]

Well, well, well....I (we) leave the country for a few wks. and all hell breaks loose!!! Reading the posts here, makes me (us) sound like I (we) have multiple personalities!!! Perhaps I (we) do!!! ************************************************** ************************************************** Let's begin with why "Birde" has not responded before this time...simply put, I (we) have had more important things (priorities) to contend with (i.e. our children who we have not seen in almost 3wks, family and friends to see and talk with, and certainly the fact of just having a major operation to rehabilitate from.). So, I (we) apologize for not posting sooner. ************************************************** ************************************************** Enquirering minds want to know...."WHO in the hell is "Birde"?" Never mind about " HOW is "Birde"?" That's fine, since none of you are apparently interested in HOW the operation turned out, I (we) will not bore you with any of the details. So, you all want to know WHO "Birde" is? ************************************************** ************************************************** When I (we) came to cando at first, and now to carecure, I (we) were under the impression that it is/was fine to remain anonymous if one was so inclined. Perhaps by making a decision to have a procedure done that is not fully accepted in the world and deciding to share that decision with others who are going through the same trials and tribulations (i.e. SCI related issues) that I (we) am (are) going through, and to ask for their input and views ...perhaps that meant that my (our) ananimity would be at risk. I (we) are (or should I (we) say ) WERE fairly private individuals in our community. We did not have any newspaper stories or interviews about us regarding the injury, and/or about the trip to Ecuador, the procedure, or anything. This was not because of any embarrassment on my (our) part, frankly it was to protect my (our) family, mainly our children! They (the children) are still very young and they do not need the added stress in their lives, nor do my (our) other family members. ************************************************** ************************************************** I (we) also thought about the fact that Dr. Kao is only human, as we all are. By remaining anonymous I (we) felt safe in our own minds, that if by chance someone decided to go to Ecuador and have this procedure done by Dr. Kao....and part of their reason for going was because of reading "Birde's" posts, well the idea that something at some time might go wrong (any operation has it's risks), or that they did not get the results that they had hoped for...I (we) did not want people blaming us or knocking down our door or calling us and putting any of the blame on us. Perhaps that is/was selfish of me (us), but as I (we) explained before, our children and their feelings and concerns come first and formost. ************************************************** ************************************************** I (we) never thought that anyone would: A.) post private pictures of me (us) on a public website without my (our) permission. B.) come back from Ecuador and openly tell others, again, without my (our) permission , who I (we) are! The thought of that offends me (us) to no end!!! As if I (we) would or have ever done that! As I (we) stated before though, I (we) should have anticipated that, and alas, I (we) did not. People are uncaring to others privacey. People are selfish and nonchalant when it comes to other individuals....that I (we) supose is just plain human nature. I (we) are not, nor did I (we) ever, trying to "pull the wool" over anyones eyes. I (we) never told untruths regarding Dr. Kao or his work. Truth be told , there was never a false post regarding me (our) injury and or feelings. Some things were withheld or changed around a tad( again to protect our children and our idendity in our small community), as all of you do on a daily basis with all your posts. ************************************************** ************************************************** I (we) have never questioned WHO you really are. I (we) never imagined that I (we)would be "hung on a cross" for public persicution....it never occured to me (us)!!! It is truely sad that all it took was one individual to post one or two sentances (that by the way are wrong), and everyone is screaming from the roof tops that I (we) should be burned at the stake!!!! ************************************************** ************************************************** So, with that, I (we) will explain who the hell "Birde" is........"Birde" is a fictitious name, a handle, a pen name (as are many of your "names"). The reason that female shows on the profile, and the reason that a female was injured was in fact my husbands (not boyfriends) post or idea to try and keep the local SCI individuals in our community from catching on to who he (we) were/are (for the reasons that I (we) explained earlier). "Birde" is Robin and Jim, plain and simple...I am plain he is simple. I (we) should not have to explain any of this, as I (we) have never asked any of you to explain yourselves. ************************************************** ************************************************** I (we) am/are doing this to clear Dr. Kao and his name. JJG was in Ecuador, but had to leave early for work related causes and he did not have the opportunity to get to know everyone as well as the others did, thus the confusison as to "Ed" being my husband, or Jim being my boyfriend, and the entire "runforbear" VS. "Birde" issue. Everything regarding Dr. Kao that I have posted is true. He (Kao) could give a flying "f***" about what others think about him or his work. He is truely gifted at what he does, and that was proven in Ecuador to me, my husband, and all the other patients and their families while we were all there. ************************************************** ************************************************** I debated on whether or not to have "Birde" die in a plane crash (when I logged on this morning)....but I (we) are not that type of a person(s). We take full responsability for your confusion! ************************************************** ************************************************** I (We) will be forever greatful for what Dr. Kao did for us, for the friendships that were made while Ecuador with other SCI individuals and their families....they were individuals that truely cared about you and HOW you are/were and not about WHO you are/were. I (we) never once mentioned Barbra DeVine working with Dr. Kao because I (we) had not asked her if that was o.k. (I (we) were trying to respect her privacy)....SOMETHING that others should practice more often. Barbra is and was very open and honest in regards to her past work with Dr. Goldsmith, and the reason I (we) know that she is/was being honest is because her story is close (if not the same) as Dr. Goldsmiths as well as the same as the various press articles that were written regarding the entire subject. I (we) will also be forever greatful for Barbra's friendship , support, and expertise throughtout this entire alleviation in Ecuador! ************************************************** ************************************************** I (we) will not burden any of you with the procedure, the results, the trials and tribulations that we went through, as none of you have posted anything in regards to wanting to know any of that....I (we) have answered your questions in regards to to who we (I) are/am. I (we) will not attempt to offer any appologies, as I (we) do not feel that any of that is relavent....and frankly, I (we) don't feel that any of you would or could give a shit. The posts at carecure or spinewire or cando were more about WHAT we go through, live with, experiance... and NOT about WHO we are....or so I (we) thought. Robin & Jim (T10 level of injury) (injury date 07/29/00) ********(Are those names and injury facts sufficiant, or must I (we) also include my (our) last name, address, phone/fax, childrens names, social security number(s), place of birth, place of employment, date of birth, our yearly income .....)? http://sci.rutgers.edu/forum/images/smilies/confused.gif http://sci.rutgers.edu/forum/images/smilies/eek.gif http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif http://sci.rutgers.edu/forum/images/smilies/frown.gif http://sci.rutgers.edu/forum/images/smilies/mad.gif http://sci.rutgers.edu/forum/images/smilies/tongue.gif http://sci.rutgers.edu/forum/images/smilies/frown.gif

[This message was edited by Birde on September 09, 2001 at 02:48 PM.]

[Curt Leatherbee]

Or whoever the one was posting this post.

This is a Paragraph.

Have you ever heard of a Paragraph?

I do remember a post on Spinewire about how you fell off the back of you're husbands Motorcycle and became a Para, unfortunetly it cannot be retrieved though do to the fact that all the archives were lost. Maybe someday we will have access to these archives.

Curtis http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Scorpion]

Protecting the privacy of yourselves and your children is completely understandable. You say you take full responsibility for out confusion, yet you are upset that we had questions. You wanted us to ask about the procedure, etc, but why would we ask that when we weren't even sure if any of this was on the up & up? I don't need to know anyone's names, but when you see ONE screen name, you assume you're posting a response to one person...a person with real concerns about stuff like their one-year anniversary, etc. Now, I find out I might have been responding to Robin or Jim on any given occasion. Can you understand how someone might feel like they've been played for a fool?

I've been online since 1993, and I completely understand one's reasons for retaining anonymity, both for respectable reasons and non-respectable reasons. I've never felt like posing as a woman online, but some guys do it for fun, so whatever. The bottom line, in my humble opinion, is that you two could have easily posted as two different screen names and still protected your anonymity without leading to all this confusion. Your reasons for anonymity are respectable. I just have to shake my head about the way you went about it.

Now, as for the procedure Jim went through, I commend both of you as a couple for going out on a limb for something that seems pretty risky without much promise for results. Now, you were obviously convinced the possibilities were worth the risk, so more power to you, and I hope it's everything and more that you had hoped for.

As for the whole anonymity thing and screen names and message boards, I think many people see Spinewire, CanDo and CareCure as a bit different than your run-of-the-mill message board online. There are plenty of people who post here who I couldn't tell you if they're male or female, young or old, maybe not even their level of injury. I think it's just a simple matter of respect--I try not to pry, and if I ask someone something too personal, they can always say it's none of my business. But, "Birde" brought on extra scrutiny when offering information on Dr. Kao's surgery. Is it so obnoxious of us to start to question the validity of Birde's posts and whether the surgery even took place? I don't think so. Guys like "Ron" are examples of how people can use the anonymity of the web to be assholes, and the very anonymity used for protection of privacy (and rightly so) is what makes people raise an eyebrow when someone everyone assumed was one person, is actually a couple. I'm not saying Robin & Jim were playing games with us for kicks, but it's not a big leap to come to that conclusion.

So, everyone take a deep breath and try and see this whole thing from different perspectives. Not many people like the idea of someone pretending to be paralyzed as an online game, and people here started to think this was going on. Jim & Robin have every right to protect their privacy & their kids' privacy, I just think it wasn't the best way to do it, in my opinion. Is it so crazy that I was scratching my head when I read posts from Birde that use "we" out of the blue when I always thought I was offering words of encouragement to one individual? I don't think so. OK, now I think I'm rambling so, I'll shut up. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

[This message was edited by Scorpion on September 09, 2001 at 08:11 PM.]

[Curt Leatherbee]

Thats the fun thing about the internet, Is it not? you can say whatever you want. The Internet is like pure freedom of speech at its best.

The question is, who is to say it is not the truth?

Anyhow, I do wish you and Jim the best and hope that in fact those Axons do start making connections in the coming months and that he does in fact pick up more function.

If in fact he does regain some function, I really think it would be worthwhile to document it in Medical journals (instead of just the Internet) so that it is more believable. That is something that really could help us all in the future rather than Internet dreaming of the possibilty of us regaining function because some anonomous person said that they could "move their legs and feet again" after undergoing an Operation.

Curtis http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Steve]

I just read your post. I agree with you, Curtis.
I don t understand why we don t see it in Medical journal or on tv. That would be a great medical news, no?
Let us wait and we'll see http://sci.rutgers.edu/forum/images/smilies/smile.gif

http://sci.rutgers.edu/forum/images/smilies/tongue.gif http://sci.rutgers.edu/forum/images/smilies/wink.gif http://sci.rutgers.edu/forum/images/smilies/biggrin.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif

[overtheline3]

birde,i look here every day to see your outcome of the surgery,and when i e-mailed you i talked to you as you where the one that was in my shows,that bumms me out you where talking for your old man,i thought i was talking to someone that knows what i was talking about,iam sure you do but if your not in this chair you dont understand at all what i was saying,that sucks,i felt like i was talking to someone who is right there with me,i bummed out,jeff

[Sue Pendleton]

I don't care if people post using real names, handles or whatever. I have no problems with family or friends posting for their injured friends or loved ones. But in the interest of science and our readership here, if you go for any kind of trial or experimental surgery or therapy and wish to post your results here the sex of the person is important. Many trials do put constraints on who can and cannot participate depending on age, level and completeness of injury, chronic or acute and sex and restrictions from surgeries may also be sex based.

For those in the Diacrin trials both men and women may not have children after the cells are transplanted and both must use barrier birth control. So please, try to stay at least within a reasonable distance of the kind of person who actually has the injury. I think for such a well educated group as the carecure people are we tend to get picky over details and in this case a bit too picky.

Please Birde, I would love to hear from all those who have had this surgery and how their rehabilitation goes afterwards. Feel free to be childless, change the level of injury to high thorasic, make your hubby a purple haired accountant for the mob if you want. But please continue to visit us and we ALL wish your husband success and many new levels of function and sensation. http://sci.rutgers.edu/forum/images/smilies/cool.gif Sue

[birdeJ]

overtheline3- I have now signed on with "J" after Birde meaning that now you (and everyone else) will know when Robin and when I (Jim) are posting. Robin is much better when it comes to the appologies, which is why she wrote the reply to everyone. I can assure you and everyone/anyone else that I did in fact post-not just Robin....Robin did in fact do all the research in regards to Dr. Kao. I did answer your emails as well post quite often here. We (Robin & I) are not about to go back and verify which she posted and which I posted....I posted about my annivers. in the care forums, and I did post about Dr. Kao's visit as well as many others. But I can assure you and anyone/everyone else that the past problem is now corrected...I am BirdeJ and Robin is BirdeR...

[Scorpion]

Jim, I don't think it's necessary to apologize anyway... "What we have here, is a failure to communicate."

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

[Curt Leatherbee]

Is that it seems to me that this Operation is very similiar to Dr. Goldsmiths Omentum Operation which as Dr. Young Stated back 1/2 year ago on Cando really did not produce any noticable results. I understand with Dr. Kao's procedure that he in addition to the intestinal lining also transplants some periphrial nerve material and there again periphrial nerves transplanted into CNS nerves has never been proven to do a whole heck of a lot. It has been tried unsucessfully for years as it did make sense in that since periphrial nerves regenerate and CNS nerves don't that it might work, but not so.

I realize this Operation is a heck of a lot to go through and you do have my respect for having taken the risk Jim. I am just very Sceptical of these type of procedures as you may have gathered during our original posts months back about the Omentum Transportation.

Sorry I put Dr. Young on the spot about this Operation, but, I just do not believe it makes a lot of sense for most Chronic Quads and Paras to fly out to Equidor and get this procedure done. nuff said.

[Rbyrd2531]

I have read the explanations and they make sense to me. To aggressively attack two people for what was at most an oversight just leads me to realize that this community has too much time on it's hands:)

I am thinking about my parents and trying to tell them how to set the stupid VCR to record one channel while they watched another. Add to that using a computer to actually get to a web page and register under separate screen names would be beyond them. They would feel lucky to get registered the first time:)

All I know is that I welcome the chance to read the updates on whoever is brave enough and lucky enough to afford to try these therapies first.
I don't plan to waste my time on conspiracy theories or making enemies of other disabled people.

This is a time to ban together despite differences and make up for what our moron president has decided to do with the stem cell issue.
Thanks, Russ

Russ Byrd

[Curt Leatherbee]

People go in for a procedure that does not really work? and spend a lot a time and money on something that could actually create problems in the long run? Does not sound like a very good deal to me Russ. I still cannot find any conclusive positive results of this Operation no matter how hard I search, I have checked medical journals, everything I can think of and come up empty handed. Everything I find is just heresay on the Internet.

Maybe in certain cases it might be a good idea like for people with Spinal Cord Cysts who need something done anyhow, it sure sounds better than the alternative in doing a shunt. Anyhow, for more info on this go to this link. Dr. Young talks about Dr. Kao here http://carecure.org/forum/showthread.php?t=39640

Curtis

[This message was edited by Curtis on September 10, 2001 at 09:03 PM.]

[This message was edited by Curtis on September 10, 2001 at 09:05 PM.]

[PN]

I just want to say thanks for sharing and good luck to BirdieJ, BirdieR, and Jake. I hope I got all the names correctly.

PN http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Rbyrd2531]

Curtis,
I did not mean to imply to you that we should chase after therapies that don't work. My response was more to stop personal attacks..especially on people who already weighed the odds in this and decided to go for it. A certain respect is called for when someone takes a chance like this. And only time will tell if it was a waste of time or not. Either way, the rest of us stand to benefit from the knowledge that comes from it.
The only thing I am beginning to realize is that if a cure is available anytime within our lifetimes, it will not be in this great country of ours because of the ignorance of it's leadership.
Sincerely,
Russ

Russ Byrd

[Curt Leatherbee]

Think of the Millions of people who will die or remain seriously disabled because the George W. Bush's Administrations lack of forsight. And think of all the great Scientists that we will lose to other countries.

I had an arguement last night with my Father who is a Conservative Republican and believes that Bush did the right thing, I told my Father that maybe one of these days he will have a stroke or something and think differently about the whole issue. I guess a lot of the public were fooled into thinking that Bush handled things correctly because they watched his speech and he appeared to come off as kind, caring, want to do the right thing type of individual. What they don't realize is that he put a real dampener on future Stem Cell research. But like I said, if you are in a situation where you figure you do not stand to benefit from the research, its like who cares?

[mk99]

Burde: What was Dr. Kao's opinion of Dr. Cheng (who is also Taiwanese just like Dr. Kao)?

What were his thoughts also on Russia?

I wonder how Cheng's procedure is different than Kao's? (No omentum in Cheng's Case... not sure about Nerve Growth Factors & Fibrin in Kao's).

Can you enlighten us on what Dr. Kao thought?

[BirdeR]

Well, I will tread very carefuly this time in regards to saying or posting or relaying messages about others. When I asked Dr. Kao about his thoughts in regards to Dr. Cheng's work in Tiawan, his replied that he was very interested in it and does speak regularly to Dr. Cheng and is extremly interested in his growth factor "nerve glue". He said something about a paper of Chengs coming or due to come out soon (perhaps he said November?) Anyway, once he meets with Cheng in Tiawan and has a chance to go over the study he will decide if this is something that perhaps might be of an added bennefit to his patients that have had his procedure in Ecuador. As far as Russia, he said that he is not really that in touch with their work at this time. Dr. Kao said he is schedualed to leave Ecuador around the 16th of September and head to Italy, Tiawan, and back to Washington for a few days and back to Ecuador. He said that he has aprox. 300-400 patients on a waiting list. While in Ecuador he received countless calls at the clinic that he was paiged for and asked that messages be taken. Perhaps if you would like some kind of proof or something more than "here-say" about Kao's work, you (any of you) should pick up the phone and make calls to past patients, ask them if you could meet them face to face, we did. We met with at least 50 before we went and talked with countless others. Interesting that no one says that they would not go through it again. There is one here in Wisconsin that can walk without the Italian boots or the walker, and two others from other states. Before we left for Ecuador we spoke to a man from Navarino, WI who was not walking with his boots or walker yet and we are home and he now is begining to. They are not dragging themselves or supporting themselves with the arms rather their legs are supporting them. They don't all hike their hips, in fact most re-learn to lift and bend each knee and place one leg in front of the other. This is not handed over by Kao through the operation, it takes a year at the least if not many years to re-gain this and very hard dedicated work. Jim stood with the boots on with the help of the walker, it took 3 men to assist to get him up...but think about it, this happened only 1 1/2 wks after a major operation!!! Once he was up from his wc, at the walker, he stood by himself, no one assisting him for at least 10 minutes. His arms were not bearing the weight, he did get a bit wobbly at times...but it is on video. He feels better than he has in a year-since the accident. He has had 3 bowel movements since the operation and rather than 1/2 hour to 45 minutes it took 10 minutes each time and he was able to "push" it out. He has abdom. muscles and thigh muscle movement that is noticable (can flex on demand). His toes move on each foot with concentration and determination. He is able to (with left leg only) push. If you put your hand under his foot he can push it and make you feel the pressure. The level has lowered as far as sensation to about an inch below his belly button. The scars on his legs and abdom. are heeling very well!!! His back scar looks better than it ever did. He starts the bladder meds. in October...in fact the cost is not $300 per month but $600 per month. Just for one of the prescriptions!! He starts the other drugs at the end of this month, including 4AP. He is on total bedrest until the 21rst as is everyone. Two wks. resume normal activities.

[pmh]

Originally posted by BirdeR:

Perhaps if you would like some kind of proof or something more than "here-say" about Kao's work, you (any of you) should pick up the phone and make calls to past patients, ask them if you could meet them face to face, we did. We met with at least 50 before we went and talked with countless others.

Since you have already done this work, why not put together a small report based on your 50 + interviews and post it here. It would be appreciated. The report should contain at least the following data. No names needed.

1. person (sex, age)

2. level/type of injury

3. x months post injury

4. x months post surgery

5. possible benefit from surgery

6. possible side effects

[BirdeR]

DETAILS ON JIM'S SURGERY-FRIDAY, AUGUST 24 (12HOURS) 1) removal of existing bone stimulater, rods, hooks, and screws from back. 2) laminectomy T6-T12 inclusive total 7 levels. 3) transpedicle anterior vertebretomy to remove bone compression in front of spinal cord until flat at T10 level. 4) bilateral forminotomy at T10 to decompress the nerve roots. 5) bilateral lateral gutter bone fusion. 6) microsurgical intradural release of arachnoid adhesions and evacuation of spinal cord cavity 4.5 cm. long at T7-T10 levels. 7) implantation of 15 fascicles of sural nerve together with dissociated Schwann cells into spinal cord cavity. 8) closure of pia over the implants with 7-0 Prolene thus retain the implants within the spinal cord. 9) suture fixation of a piece of omentum to the spinal cord and both sides of dura. 10) dural graft autologous fascia lata. 11) Jim completed (as do all the patients) 13 hyperbaric oxygen therapy sessions following the surgery each lasted 2.5 hours each. (1 session per day). ************************************************** *********** MEDICATIONS THAT JIM IS ON OR WILL BE ON: 1) Proviron, (testosterone) 2 tabs. before breakfast each day for 6 months. 2) Yohimbine 5.4 mg., 2 tabs. before sleep at night each day for 1 year. 3) Viagra 100mg., 1 tab. as needed 4) Urecholine 25 mg., 1 tab 3x a day before meals for aprox. 6-8 months. 5) Dibenzylene 10 mg., 1 tab. 3x a day before meals for aprox. 6-8 months. 6) 4-AP from Mr. Greg Dent who will decide along with Dr. Kao on the exact dosage. ************************************************** ***********JIMS BEGINING EXERCISE PROGRAM 1) begining 9/8: continue range of motion exercises at least 2x a day every day on both legs (as shown to us). 2) begining 9/14: begin to stand in standing frame/table (as was shown to us) 1hr. in AM and 1 hr. in PM. (at least). 3) begining 9/21: begin iliopsoas exercises , (with equipment shown to us), against 35-40 lbs. weight (as shown to us). Start at 1hr. a day (1/2 hr. per leg). May work up from that. 4) begining 9/28: begin leg exercises in face up position, (with equipment shown to us), against 30lbs. weight (to start) (as shown to us). 2 hours a day (1 hr. per leg). May work up from that.

[birdeJ]

There are 3 American families (each with a patient) that are now stuck in Ecuador because of the kaos going on here in the U.S.. As well as Dr. Kao and Barbra DeVine. I just phoned them and they are aware of the problems here. Jake was schedualed to leave tomorrow with his mom and 2 others with him. As of now, they are not allowed to leave as schedualed. Very nerve racking to say the least!!! Please pray for their safe and quick return to the U.S.!!!!!

[Curt Leatherbee]

I was Just saying to my Lawyer in talking to him friday that I could smell something like this in the air with all the problems going on in the middle east that it would only be a matter of time before it came to this country.

This event I believe will change how we have grown accustom to taking our freedom for granted in this country. It is real scary stuff. A lot of lives were lost today. No telling how long it will take for things to get back on schedule again with all kinds of schedules including Air travel, I wish Jake and the others a safe trip soon back to this country. I am sick over this whole thing. Lets pray that not as many lives were lost today as it looks like at this point.

[giambjj]

Birdie:

Thanks for keeping everyone abreast of things there. I suspect it will be safer that they all stay there until things calm down. The patients can spend some more time in the chamber and trying to stand. I on-the-other hand am scheduled to go Cairo through New York on saturday. I may cancel that meeting until Jake is home and flying is safer. Please pray for the families, who have lost love ones in this latest terrorist attach.

Sincerely:

JJG http://sci.rutgers.edu/forum/images/smilies/confused.gif

[rdf]

You perpetrated a deception, birde, jim, and robin. You went far beyond what was needed to "hide" your identity. You used one username to cover the thoughts, emotions, feelings of two people, male and female. No matter what everybody else feels, what you did was pure bullshit, plain and simple. All you had to do was be truthful about your gender(s), at least. There are a myriad of ways to hide your identity without using and taking advantage of other people's kindess, advice, and sympathy.

You should be ashamed of yourselves, many people, including myself, gave you their heartfelt emotions in order to help a woman with an sci, just to find out it was all bullshit. Shame on you, all three of ya. In your own immortal words, "People are selfish and nonchalant when it comes to other individuals....that I (we) supose is just plain human nature. I (we) are not, nor did I (we) ever, trying to "pull the wool" over anyones eyes." You did exactly that.

This whole "protect your privacy" story that you post could very well be just that, a story made up to cover your deceitful, shameful actions, something you took 3 or 4 days to think up. Then again, I might not be me, right? So, forgive whoever is posting this if I touch a nerve.
http://sci.rutgers.edu/forum/images/smilies/wink.gif

When you elicit advice and sympathy from another person under a guise such as you used, and when you are so public about your sci surgery that you broadcast it making many people consider the same, then you are somewhat accountable, and there has to be some semblance of truth to your identity, at least your gender and actual injury level, etc., for the very reasons SueP mentioned.

I don't care what everybody else thinks, they can think what they want, and from what has been posted they buy your story hook, line and sinker. Good for them, I'm not so gullible, and when I give a "girl" advice on her injury that she accepts, I like to think I'm actually talking to a girl with an sci. Not the fraud that was you, robin and jim. Period.

Good luck with your recovery, I truly wish that one of you gets better because having an sci is a true horror that nobody can know except those who live it every day and night, in reality and not through the vicarious postings of another. Of course, we have no idea if there even is a jim, a robin, or a birde, for that matter.

It could very well be ron who is posting, or some other wingnut. And that is certainly a possibility, only made allowable if everybody denies their own identity because they like to play games on the internet. Let me reiterate, there are many, many ways to hide your identity other than what you did, what you did turned into a game. You had plenty of chances to be truthful, either via email to those you spoke to, or on spw itself, without losing your anonymity.

There comes a time when one bears their souls and wears their emotions of their sleeves that there has to be some accountability, and truth. You can use the privacy excuse as much as you want, but the depth that members of this board go through to help each other, the way they suffer every day and report that suffering on here, the many indignities they put up with each and every day which they share with others suffering the same way....., well, they expect and deserve the truth to the extent that it can be given, which entails being truthful about your gender and injury level, and not have them divided up between two entities.

Again, I might not be me posting this, ok?? I just don't wany any other spinal cord injured people in my small town to know I have an sci. I haven't been outside in 15 goddamn years. I might not even be the same rdf from spw, or cando, right? Right???
http://sci.rutgers.edu/forum/images/smilies/cool.gif \/ http://sci.rutgers.edu/forum/images/smilies/tongue.gif

"the reason that a female was injured was in fact my husbands (not boyfriends) post or idea to try and keep the local SCI individuals in our community from catching on to who he (we) were/are ...."

And you say you won't apologize for that? Shame on you.

Good luck with your recovery nonetheless. If you are actually an injured person, then try to stay healthy and don't overdo it, and make sure you rehab rehab rehab, because that is the secret to teaching your body how to do it all again.

[PN]

RDF:
You are causing me to think, I need to "mull" this over.

PN

[birdeJ]

http://runningbear.com/main/Ed/text/8-21-other-patients.html If you follow Ed Paiges webpage you can see and check the stories and pictures they have and you will find not only myself(Jim) but also a picture of myself and Robin as well as many of the other patients that had this operation this time around...we are not make believe, and I really am spinal cord injured and those posts really were my feelings, not Robins....MINE! We never insulted people or hurt people on this forum, in fact we took as much verbal abuse and or tongue lashings as anyone! Now, I am suposed to ask you for forgivness because I am a man with sci and not a woman with sci......FINE!! I am so sorry that I am not a woman that I led you to believe that I was. HAPPY? I didn't think so, what the hell is the big deal? The big deal for me is that you all know who I am and I have not a clue who you are! I have a spinal cord injury as many of you do...and because of a misunderstanding and an error of judgement on my part, you all think and say that I am an insult to the sci community...FINE! Do I demand the truths from you before posting and supporting any of you? Do I post that you are all self absorbed and shallow minded? Do I insult you on a public forum? No.

[This message was edited by birdeJ on September 12, 2001 at 10:43 AM.]

[giambjj]

Dear Birdie (J+R):

Thanks for the great photos. They brought back fond memories. I had not seen the pictures of Jake. Jake and the rest of his group will be home this friday the 14th, God Willing! They are all doing well and in good spirits.

Sincerely:

JJG

[overtheline3]

thanks jim for the photos,how are you feeling?so you have already got feeling back that you didnt have?thats incrediable.....is t-7 below a t-8 or above,i keep hearing different,just curious

[et]

Can anyone tell me the phone # for the hospital in Ecuador where Dr. Kao performs his surgeries ?
Thank You.

[Curt Leatherbee]

This should help out http://www.spinalinjury.net/html/_spinal_cord_101.html

[BirdeR]

The phone number is:011-593-2-893040 and the fax is:011-593-2-891267.

[PN]

I have a problem with people like Joe Breslin or "no author" who wrote that he raises $750,000 a year for spinal cord research and employs people in wheelchairs who use headsets to do their job. He also spent time telling us about how he saw individuals in wheelchairs with greasy hair who smoke, drink and spend time in "titty bars." These individuals remain anonymous and sucker some of us into their mindless topics which distract us from discussing more substantive issues. I think if they had the "kahonas"
to put down their first and last names, I would have a little more respect for them.

It is a privilege to post on this forum and Dr. Young at any time can make a unilateral decision to kick anyone off for inappropriate conduct. There may come a day when we may have to add our first and last name, including city and state, along with an e-mail address to our profile. By the way, rdf, if you reverse the initials on your screen name you come up with FDR! "The only thing we have to fear is fear itself!"

[birdeJ]

today I'm to start with my standing frame again. Since I have been home, I have been on restriction with physical activities. I have not been allowed to transfer on my own. I have been bored silly, but don't want to risk the chance of busting any stitches. The stitches on my back, legs and stomach as well as the ones inside of me are all the type that disolve. The outside ones look great, in fact the ones on my stomach and legs are hardly noticable. I am to try standing in the frame for 1 hour total today (1/2 hour in morning and same at night or afternoon) and try to work up to 2 hours a day. I did it before I left and that should not be a problem. I don't have too much pain, and the numbness I used to have is gone completly. I am able to move the toes on both feet, but it takes a great deal of concentration. I can move the left leg and apply pressure with it, again much concentration is required. My ab muscles are coming back as are the thigh muscles. I can feel what would seem like a dull ache when I need to have a bowel program...and can push it out . I have not had any real side affects, some who had the surgery, while I was there had awful headaches following the operation, some were very sick to there stomach, some slept all the time. Hiccups came to everyone, even those who could not or did not hiccup before the operation. We were told that the hiccups came from the hyperbaric chamber, and that's when we would get them, after being in it.

[pmh]

Originally posted by birdeJ:

I am able to move the toes on both feet, but it takes a great deal of concentration. I can move the left leg and apply pressure with it, again much concentration is required.

Were you able to move your toes and leg BEFORE operation?

[birdeJ]

as far as my toes before the operation: I could move the big toe on left foot slightly, and once or twice moved the other big toe on the right foot, but now I can do it more so with all the toes on both feet. The legs before the operation were dead for the most part, limp noodles! The right leg does not move on comand, however when I am in the weight machine that was built by a gentleman out of Greenbay, WI (who also had this operation) and I am able to flex the thigh muscles. You are able to see that and feel that. The left leg does move on comand...when I either lay on my back or sit in a chair and have my knee bent in the air (which my wife or therapist must do) I can push with the leg and you are able to feel the leg "push". Two others that were there could also do this. One who had a spider bite when he was younger and he did have some feeling in his legs before the operation, but no movement that I am aware of, and another who was injured from a gunshot...Greg Perry who left almost as soon as I first got there. So I'm afraid that I don't have a great deal of info on him. I do know he has not had to cath in 2 years, but he credits that to a strict diet and a herbologist that prescribes special herbs for his bladder program. When he did the weight amchine exercises at the clinic in Ecuador I watched and his leg or thigh muscles were not flexing or responding like mine seemed to be. He was injured 5 years ago, the spider bite gentleman was about 12 years ago and I was 1 year ago. I could not push my BM on my own, I had to use a supos. and help it along, that took about 45 minutes to an hr. and I did that once a wk. Now I have to do it every other day cause otherwise I will fill my pants and have a dull stomach ache, and no suppos. is really needed, it just happens, and if I push you can feel my ab muscles get tighter and it just all comes out...time is about 10-15 minutes.

[pmh]

BirdeJ, hopefully you recover even more when the possible regeneration kicks in.

It will be interesting to see if Scott (http://members.surfsouth.com/~swachob/) (C5/6 quad, 12 year post) experience any improvement. He had surgery two weeks ago.

[birdeJ]

We met and saw Scott while we were there. His parents and him are nice people! Scott made it through the operation just fine. He was having the awful headaches that I talked about and was also sick to his stomach. He is still there and having the hyperbaric chambers (2 1/1hrs. per day). It is my understanding that he is still having the headaches. Some have them, and others don't. The 3 Americans who are there are Jake, Scott, and Jay (spider bite). There are also 3 Ecuadorians there as well.

[ll64260]

[QUOTE]Originally posted by birdeJ:

I don't have too much pain, and the numbness I used to have is gone completly.

----------------------------------------------
BirdeJ,

When you say numbness, is it kindda similar to burning pain? If not, did you have any burning pain before? If so, did the surgery eliminated that pain also?

[birdeJ]

the numbness I had was in my butt and in my hands and lower arms. Dr. Kao said that the numbness in my hands and lower arms was most likely (or could have been from) the compression on my spinal cord, I am not sure if that's why my butt felt numb all the time too. I had burning pain in my lower back around the injury level (T10). The burning seems to be gone, however since the operation I have what seems to be a hypersensitive area on my back on the left side about the shoulder blade area....not by the scar or insision area...farther over. My back is soar around the T10 area too, but does not burn...Dr. Kao did chissel away a considerable amount of bone in that area though. He said that "soarness" will subside/go away in time.

[antiquity]

BirdeJ,
It sounds as if you were incomplete before the surgery, would have rated yourself an ASIA B or C?

Thanks.

[birdeJ]

That's a good question Seneca, I guess I never asked Dr. Kao what ASIA scale he would classify me under. The two surgeons that did my previous operations in the U.S. (Milwaukee and Madison) as well as my general doctor all said I was ASIA A. I was/am fairly new to this entire SCI thing and took there word for it. I'll get back to you on what Dr. Kao says. I guess by definition I would guess ASIA C, although the only real movemont below my injury was the toes and that was slight.

[birdeJ]

Dr. Kao gave us a contact name in Georgia for 4-AP, and we called and according to that gentlman, he is unable to supply the 4-AP to us unless we drive to Georgia and get it. Any other ideas or names on were to find it? I contacted Acorda ther. as well as college pharm. I spoke to the gentleman at college pharm. before we left, but I can't find his ph. number or remember his name. Any help would be appreciated! Thanks.

[X-racer...]

GOOD LUCK WITH YOUR THERAPY AND FUTURE RETURN BIRDEJ


College Pharmacy 3505 Austin Bluffs Pkwy.
Suite 101
Colorado Springs, CO 80918
fax:210-614-3362
1-800-888-9358 ext 116
Ask for Pete Huseman

LIVE IT UP AND LIVE IT LARGE!!!!

[giambjj]

Jake and his mom finally got home yesterday evening. It took a call to the US embassy in Equador for them to be able to get on the plane. Jake is resting comfortably now. He is still rather weak from the long trip and 2 surgeries. While in Equador he had the first of two tendon transfers and his hands and forarms will be wrapped for 2 more weeks. He hopes to be able to get back to school in 1 week.

Sincerely:

JJG

[Steve]

hi jgiambro

What movement did Jake had before surgery?
arms, fingers,...

Thanks for your answer

Steve
http://sci.rutgers.edu/forum/images/smilies/tongue.gif

[giambjj]

None below C5 (sensation or function) He was complete!

[birdew]

Why won't you let me(us,them,ya'll,I, me, he, she, it, they, if, but, so) have us privacy.There's nothing wrong with spending weeks at a time pretending to be a cripple of the opposite sex. Ever since word got out that I got this groundbreaking (nevermind the fact thousands of others have had the same operation)surgery, people have been surrounding my hidden lair located deep within the hills of Georgia with the intention of gawking at me, my hideous looking wife, and my short bus riding kids. The pictures that that privacy invading jgiambro guy took are plastered all over the internet. All the major TV networks have cut back on covering that thousands of people dying thing in order to carry my inspirational story. In fact, we can't even go to the secluded creek where I wash our clothes (with lye soap, of course), gather the berries, and catch the fish us thrive on without being mobbed by the local gimps all wanting to know how they too can get this miraculous surgery that lets you move not just one, but two toes. All I ever wanted was to live out the rest of our years as a sun fearing, people avoiding, shack dwelling, inbreeding hermit with multiple personalities. Is that too much to ask?

[This message was edited by birdew on September 18, 2001 at 10:48 AM.]

[etexley]

Because we are a team. We are in this together, everyone on this forum. We are a team battling our way OUT of these wheelchairs. Let's be straight with each other. Together we stand.

Eric Texley

[martha]

Birde (J & R), Jake and everyone else willing to got to such lengths to find a cure or some improvement in their situations are to be commended and should have our full support whether we would choose to do have the same procedures ourselves or for our loved ones. I know we should ignore the posts of the Birdew's and Ron's of this world, but I simply don't understand why anyone would go out of their way to try to insult, hurt, or demoralize another person at all, and especially one that is hurting. In my mind, these imbeciles are their own brand of terrorists. They are terrorists of the mind and the soul and should be eradicated from this forum in the same fashion as any other terrorist should be eradicated.
Good luck to all of you.

martha

[giambjj]

That is what this form is all about. Ever since I have posted here, I have gotten dozen of emails from all over the world from individuals needing advice and support. These individuals have contacted me through my son's web site (www.jake15.com). We are hoping to use his site and this forum to provide hope and resources to hundreds of thousand of crippled people all over the world. I know that it is working from the positive feedback that I have received over the past 8 months. A few derogatory comments will not sway our resolve.

Best Regards:

JJG

[birdeJ]

thankyou Eric, Martha, and jgiambro, and the rest of you that have privatly sent emails supporting me and my family. I am not concerned what others post in regards to hateful and angry comments...I was upset about their posts regarding Dr. Kao and his credibility. B.T.W. jgiambro did not post any pictures of anyone, you AGAIN have the wrong individual.

[birdeJ]

We got in contact with College Pharm. and the 4AP is on the way, thank you everyone. I would also like to welcome home Jake and his mom (Susan) or as I like to call her (Still) (inside joke). I am still concerned about the two other patients in Ecuador...Jay and Scott and their family members that are with them, I hope they get home safe as well and soon!

[Scorpion]

birdew = Ron

Ron = Punk = @$$hole

'Nuff said.

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

[BirdeR]

Can anyone tell me more about these medications: 1) DIBENZYLENE 2) URECHOLINE Jim (and others who had Dr. Kao's procedure have been prescribed these meds. I am interested in the side effects that they may produce. One of Dr. Kao's recent patients started taking the meds. as prescribed and had a reaction to them. "when i took them like it said. at night i started having to swallow about every two seconds then my throat would close up and i could'nt swallow at all. also i got real bad bad shakes then sweats so bad the bed would be solid sweat." This is what was explained to us. Any thoughts? Why would this happen? An allergic reaction perhaps? http://sci.rutgers.edu/forum/images/smilies/confused.gif

[Wise Young]

BirdeR, the severity of the reaction described by the other patient is a little unusual.

Dibenzylene is phenoxybenzamine, an alpha adrenergic receptor blocker. It may be used to treat autonomic dysreflexia. It is sometimes used as an antihypertensive (i.e. for reducing high blood pressure). It is also sometimes used to treat bladder problems and is often used to treat pheochromocytoma which is a tumor condition that is associated with excessive release of catecholamines. Phenoxybenzamines can cause nausea, dizziness, drowsiness. It should not cause the excessive sweating and in fact is used to treat excessive sweating associated with pheochromocytoma.

Urecholine is a muscarinic receptor blocker and is used chiefly to reduce bladder spasticity. t can cause dry mouth.


I am not familiar with the combination of the two drugs. However, the symptoms described by your friend should be assessed by a doctor before he continues with the treatment. I think that they are unusual enough to suggest investigation for some other possibilities besides an "allergic" response. It doesn't sound like an allergic type response.

Wise.

[Sue Pendleton]

Except for the sweating that sounds like my reaction to tetanus shots. One of these days I'm supposed to find out if it's the toxin or the toxoid (??) that I'm allergic to because I haven't had a vaccnation in 20 years now and that was in basic training and the idiot drill sargeant refused to believe anyone could be allergic to tetanus shots. Two hours later when he saw his first case of anaphalactic shock he learned differently.

[smith109]

Has anyone had this procedure done by Dr. Kao that their injury was a c4,5 and if so his or her outcome? Or anyone know who we can contact to find out?

[BirdeR]

smith 109- there were 3 people that were within that level that just had this procedure in August/September. Jake is a C4 I believe, John is a C4-5-6 and Scott is a c5-6. Jakes website is: http://www.jake15.com/ (info. is on that site how to contact him or his family). Scott's webite is: http://members.surfsouth.com/~swachob/ (again, info. is on that site to contact him). John's email is: showtm490@hotmail.com. I also believe that Kyle Burris is about that level (C4-5), his website is: http://www.kyleburris.org/ (contact info. is at the site). There are more, but I will have to find their info. It is too soon to really know how Jake, John, or Scott are doing or what the results are, however Kyle is doing pretty good, and it's still early for him as well.

[giambjj]

Jake's injury was C4-5 complete. He was able to stand in the standing table for 7 minutes before he left Equador. He can hold his knees in a bent position and can move his legs slightly. He had not sensation below C5 prior to the surgery.

[giambjj]

Kyle has gone from a C4-5 complete to a T5. He can stand, pick up 5 lbs weights with each hands, and mow the lawn with a lawn tractor. He is 10 months post surgery.

[Curt Leatherbee]

it looks like he just has sensation around the t-6 area, that is quite different from going to a c-5 complete to a t-6 complete (or t-5 as you said). It does appear though that Kao's procedure does get one a little more sensation around the chest area though, so that is encouraging.

[PN]

I would also like to know if Kyle is a C-5 or a T-5? There is a huge difference. One is a quad, and the other is a para.

PN

[giambjj]

One of Dr. Kao's recent young male patients from Texas, who was a paralyzed quad due to a spider bite, is now walking less than 2 weeks post surgery.

[Carl R]

Does anyone know if any of the patients have regained a significant amount of sensation? It sounds as if most are getting some motor return, but very little sensory return.

I'm drawing my own conclusions here, but I believe Dr.Kao is proving that decompression can be most helpful. With most of the patients gain function so quickly, the regenerative process hasn't had time to work. I wonder what the cost difference is to have this surgery done in the U.S. versus traveling out of the country.

[overtheline3]

i go this saturday to meet dr.kao at the hilton here in san deigo.Iam just wondering if poeple can give me some real good questions for him?i really want to know if this surgery will make my spine even harder to regenerate if and when other procedures come out?or is it just adding parts that should already be there?thanks jeff

[Wise Young]

Carl, on the contrary, most of the reports that I have heard included one or two levels of sensory improvement. The walking recovery cited below is one of the first times that I have heard of locomotor recovery. I hope that Dr. Kao will publish a compendium of his results. Wise.

[Wise Young]

jeff, you have been asking great questions and you should continue to ask them. I'll bet that Dr. Kao will be very surprised by all the information contained on these forums regarding his procedures. Wise.

[BirdeR]

First of all, Kyle is a quad not para. C level injury, he may have sensation to T5 but on all accounts he is still a quad. As for the gentleman in Texas (spider bite), I have been in contact with him since his return which was this past friday and he is not walking. He took a few steps with his walker and the boots while in Ecuador, but far from walking. He is on a 2 wk. rest (i.e. not to transfer alone or move around too much...) as is every patient that has had this procedure by Kao. He did have sensation and very small amount of function in his lower legs before the procedure, and that is the same now, perhaps more control over the legs(and/or muscles in the legs) (again not much) and perhaps more sensation. He asked for information on the 4AP and I forwarded it to him. Dr. Kao believes or at least says that he believes to his patients that this procedure will be like a stepping stone towards the cure, that this will put people ahead of those in regards to the cure. He really believes that it will be a combonation of therapies, meds., procedures and so on that will be the cure and this is one of the procedures. That is what he believes. He still does research and is always interested in others research as well. He is in fact waiting for Dr. Chengs paper that should be out within a month or so. I found that interesting and asked him, if he is so eager to read this paper about Dr. Chengs work, don't you think others are as equally interested in some kind of paper or book describing your findings, research, and work? His response was "perhaps they are, I am working on the book, but don't seem to have that much time to dedicate to it". He seems more interested in hands on work and helping others than proving his research with papers, which is unfortunate.

[samiam]

What makes a spider bite be able to paralyze someone?

Sam

[BirdeR]

although I don't know much if anything about spider bites, I will tell you what he said to me. They are not really sure to to this day what kind of spider it was that bit him. It took almost a wk. before the bite caused the paralysis, aparently the poison from the spider is what caused the paralysis. As the poison spread throughout his system/body it crossed the spinal cord and at the area it crossed is where he became paralyzed (which was a C level). The paralysis moved to the T3 level throughout time, and that is the level he consideres himself and Dr. Kao agreed. I really don't know more than that.

[Popye]

Thank's Birde, for all your postings, keeping all of us updated to the progres. It seem's you both have gotten a little flack on not giving The right info. on who you where to begin with, not sure, but you two are definitely ok with me. Keep up the good work, and keep posting.


Paul J. http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[BirdeR]

Jim started his leg exercises. We had our handyman friend build us a system/machine. It consists of pulleys and cable and weights. It is attached to the ceiling of our room via a piece of wood bolted to the studs and the pulleys are attached to that (two of them) and the cable runs through the pulleys. The cable is then attached to the leg with a clip that fastens on to a cuff (supplied by Kao) that goes around the ankle. The weights are attached at the other end and he does what kind of looks like pushups (while on his stomach), which in turn makes his leg move the weights up and down (these are Iliopsoas exercises). He can feel it in his abdomin. He also has an exercise for on his back with the same system/equipment which is to strengthen his gluteus and quads. With this system/equipment he can also do upper body strengthining exercises as well. I'll see if I can get a link (to a website-if he has one) of a man who makes and sells his own verssion of this equipment.

[cthompson]

Has anyone heard from Kelly Butler from Texas, he had Dr. Kao surgery sometime back, but I have not heard anthing since he returned.

[BirdeR]

we have not spoke to him in a while, but we have his phone number, if someone needs or wants to call him just email us.

[ll64260]

Originally posted by overtheline3:

i go this saturday to meet dr.kao at the hilton here in san deigo.Iam just wondering if poeple can give me some real good questions for him?i really want to know if this surgery will make my spine even harder to regenerate if and when other procedures come out?or is it just adding parts that should already be there?thanks jeff


Overtheline3,

My friend (C5) and I (T10) also flying down there this Saturday can to meet Dr. Kao on Sunday. He didn't give me much information over the phone though. Thanks to both Dr. Young and Birde, we can go prepared. It would good to learn if his procedure would at leat fix my nagging pain?
Good luck to you.

[birdeJ]

overtheline3, VH, and friend....hope all went well w/ your meeting with Dr. Kao. Let us know the details when you all have a chance!

[BirdeR]

It is my understading that Dr. Kao has 12 patients schedualed for his next trip to Ecuador. I believe they will be in Ecuador from November 2 thru December 15. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ As for Jim, he is doing pretty good. Every day he is suposed to stand at least an hour in his standing frame and 2 hours of leg exercises. I'm afraid that he is not able to last the duration yet on the leg exercises. Usually an hour, but remember he just had a major operation and still is stiff and soar. He is taking the 4AP (5mg. caps.) and takes 2 caps. 3x a day. He has had no bad reactions to any of the meds. He is able to tell when he has to have a BM as he feels a strange feeling in his stomach. He has strange sensations that seem to shoot through his legs(not all the time)we are not sure what this means, but they are new. His toes seem to tingle and it bothers him. He is able to regulate his temp. better. He can still wiggle the toes (with effort) and move his thighs side to side again with effort and concentration. Over all, he is doing well. We will continue to do the exercises and standing, we think the boots will be here in early January.

[birdeJ]

Jim here-it would seem that Dr. Kao is making his rounds to not only prospective patients but also dropping in on his last group of patients that he operated on this past Aug./Sept. From all I have heard from that were down in Ecuador when I was, Dr. Kao is only giving a day (if that) notice that he will be at the house. We just heard from Teddy and Ed (Ed is in rehab still) and here is a short version on Kao's visit with Ed: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ "Dr. Kao and Deanna ( his surgical nurse from
Venezuela) arrived about 11 AM on Saturday the 20th. Dr.
Kao is very please with Ed's progress. He says
he is gaining sensation. The leaking from his
bladder is a sign of this and he does not want him
to self-cath anymore, but use a "condom catheter"
for the next 3 months. This is similar to the
indwelling, but does not invade the body. Ed is to
hit himself(like karate chops) the area of the bladder (several times
and quite hard) every four hours or so to induce
the bladder to empty
Ed will slowly begin to "feel"(sense) when his bladder
needs to be emptied and slowly regain the ability
to control when to urinate. Dr. Kao says Ed WILL
have his bladder control back, as well as bowel
function, but that he will continue to have
"accidents" for many months(most likely). Dr. Kao also did NOT
approve of the self-catheterizing method Ed has
been taught. It is NOT sterile. Bottom line,
this condom catheter, which needs to be changed
daily (allowing 30 minutes to an hour for skin to
be exposed to prevent irritation and sores), is
much less time consuming, less expensive and less
risky for infections than what Ed has been doing.

Dr. Kao is pleased at Ed's back and side muscles.
They have become much stronger. As far as
the"bees in the abdomen" problem, Dr. Kao says he
is regaining sensation. He reviewed all of his
medications and the schedule and says they are
just fine, they are doing the job.

NONE of this is a fast process. MOST of the
"little problems" Ed complains about with his body
are related to his actually regaining sensation.

Ed had hit his head very hard on a cement wall in
OT a few weeks ago. Dr. Kao ordered another MRI
and x-rays. When I gave the prescription to the
head nurse, she was unaware of Ed having hit his
head. Evidently, a report was not made
(required). It is not secret, but hopefully, there
is no damage. Ed does to appear to have any
marks, bruises or effects from it. The MRI will
tell Dr. Kao what is going on in the spinal cord. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ So, I can only hope that Greg Perry will be next (Cincinatti) and than me in Wisconsin...Dr. Kao also has yet to visit Carol in Texas...but he has seen all the other...I guess we will see this week!! I'll let you know what happens! By the way, I talked to Greg Perry the other day and he is standing with his walker every day for at least an hour...he has his boots already, I am still waiting! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif I think my feet are bigger and they take longer to make...ya think? http://sci.rutgers.edu/forum/images/smilies/confused.gif

[This message was edited by birdeJ on October 21, 2001 at 07:17 PM.]

[birdeJ]

oops http://sci.rutgers.edu/forum/images/smilies/confused.gif the same message posted over and over...sorry http://sci.rutgers.edu/forum/images/smilies/confused.gif

[birdeJ]

http://sci.rutgers.edu/forum/images/smilies/confused.gif http://sci.rutgers.edu/forum/images/smilies/eek.gif http://sci.rutgers.edu/forum/images/smilies/confused.gif Not sure why this happened kept posting same message AGAIN SORRY!!!

[birdeJ]

Paralyzed man eases to recovery


--------------------------------------------------------------------------------



Gregory Perry, 28, who is paralyzed from his chest down, believes he is closer to walking again.

He had reconstructive surgery through nerve implantation Aug. 13 in Quito, Ecuador.

He is on bed rest at his home in Silverton.

He has a little feeling in his toes now, something he hasn't felt in five years after he was shot twice. One bullet entered his chest, an inch from his heart. Another entered his abdomen near his spinal cord.

Dr. Carl Kao, who performed the reconstructive surgery, said the heat and vibration from the bullet as it passed his spinal caused a 2-inch collapse in his spinal cord.

The collapse created an empty space which expands, causing nerve fibers to be disrupted - which causes the paralysis, Dr. Kao said.

The surgery involved implanting nerves and cells into the empty space, Dr. Kao said.

"I can even feel the sensation of bladder and bowel functions," Mr. Perry said. "I can get some feeling in my legs also."

But there are a lot of work ahead for him. Once he is taken off bed rest, he begins his rigorous routine of physical therapy.

He is familiar with the therapy. Prior to his surgery, he would lift himself from his wheelchair onto physical conditioning equipment where he worked out 10 hours a day, six days a week.

"It is going to be a long process, but I will make it. I will walk again," he said.

[ll64260]

I will be going to Ecuador on 11/23, just got my airline ticket yesterday. My husband and I are very busy getting all the details worked out for the trip. We didn't expect it happen that fast. We met Dr. Kao about a month ago and decided to go thru the surgery. For those who have gone to Ecuador, do you have any problem arriving in Quito airport. My AA flight schedule from SFO to Miami and then Quito usually delay from 30 minutes to 2 hours. Any helpful suggestion for the whole process are welcome. Thanks.

[BirdeR]

VH-when you arrive in Quito you should be prepaired to be carried from the plane as they have only those stairs on wheels at the airport to exit and enter the plane. This went very well for us and I have yet to hear any type of horror stories from anyone that has gone there for Kao. The personel at the airport are trained to do this (Barbara DeVine had gone to the airport some years ago to teach the personel how to properly assist wheelchair individuals and this info. has been passed on to all the employees at the airport). Be prepaired for quite chilly weather as well. The weather in the evening and night is downright cold. A few dollars at the airport (given to the individual assisting you) will go a long way...i.e. no long lines in trying to check in-$1-$2 is all we are talking. It's impossible (REALLY) to get travelers checks cashed in this country! Only one or two banks do this and they are very very hard to get to. Best bet...cash and in small bills...finding someone to cash the large bills is also hard! Credit cards are almost useless...it took my father-in-law an hour, 5 phone calls, and a huge headache at a big department store to get his to go through-REALLY!! At the clinic (hospital) the easiest way to call the U.S. was either collect-very costly or with an ATT phone card...it seems the other cards were very difficult to use if not impossible...not sure about prepaid phone cards. Email us if you have any other questions we would be happy to try and help you out!! Best wishes to you and your trip and operation!! Our thoughts are with you!

[mattblan]

is Gregory Perry's cord compressed or severed?

[BirdeR]

mattblan- Greg's cord collapsed from the heat and vibration of the bullet. If I remember corectly, Dr. Kao did a decompression procedure on Greg. Jim spoke to Greg via phone not too long ago and greg says he is doing great. Greg is very dedicated to this and has been conditioning his mind and body for some time before the operation. He does have some pain still. He was able to void his bladder since before the operation without cathing. He takes special herbs that have been specialy blendid by his herbologist for bladder and bowel function. He is now taking special herbs for nerve regeneration as well. He is not taking 4AP. He works out at least 8-10 hours a day with weights and standing and so on. He is standing with his walker and boots everyday. If anyone walks after having this procedure....HE WILL, no doubt about that!

[mattblan]

i guess i still don't know what collapsed means;

[BirdeR]

Gosh, I don't want to speak for Greg and/or Dr. Kao in case I get something wrong...my understanding is/was that the bullet did not hit/touch the spinal cord. If I understand what happened...the bullet came close and the heat and vibration caused the cord to...cave in...become compressed...pinched off. I don't think Greg ever had any hardware or back stabalization surgery. I think they removed the bullet and so forth. I think that Dr. Kao was the first to do any type of operation on his back/spinal cord. Dr. Kao did a decompression procedure on Greg. I will have to ask him or Dr. Kao more specificly what exactly happened to the cord when the bullet went in. http://sci.rutgers.edu/forum/images/smilies/confused.gif

[overtheline3]

I'am leaving on nov 20 for ecuador,my surgery is on the nov 23.I'am just getting cold feet about this even though i asked dr.kao all the questions i wanted to know.He said he really feels there is know reason i can't get feeling down to my knee's back,doe's he tell everyone that he can do that?my injury is about a inch long,and i'am 2yrs post as of last week(t-7 complete)does that make a huge difference on the length of your injury?just to get back my blatter and bowel would be incrediable.Will that feeling really be the same?I guess at this point i'am willing to try anything and that's why i'am hoping i'am not just jumping in the dark.My brother and mom are going with me,my mom knows spanish very well so i figure that will help alot.Has anything changed on any of the poeple that went down in august?how long did he tell everyone that he has talked to or had this surgery done that it would take to get a change?i know it will take alot of work on my part and i'am more then willing.Thanks jeff pike

[BirdeR]

first of all-we want to wish overtheline3 and everyone else a safe trip to Ecuador and let you all know that our thoughts and prayers are with you during this journey.- Now with that said here is an update on Jim. Although it is still too soon to see or know all the results from having this procedure we are still seeing and/or experiancing good things. We are not sure if these are from the decompression, the nerve transplant, the 4AP, or just "spontanious" recovery. Jim continues to do his exercises and so on, he is up to 50mg. a day of the 4AP, he has not taken the viagra or yohimbine as of yet, he is taking the Proviron (testosterone)-2 tablets before breakfast every day, the Urecholine(25 mg.)(1 tablet 3x a day), and the Dibenzylene(10 mg.) (1 tablet 3x a day). Jim is not taking any pain meds. at this time and has not for about a month. Before the operation he was taking a ton of pain meds. Jim has started his bladder exercises and before he caths he gets on the toilet and applys pressure to the abdomin area and trys to urinate without cathing. He is able to urinate some by doing this (almost every time). He still needs to cath afterwords to make sure that it's emptied. He usually only gets about 50cc-100cc out after this...where he used to get 200-350cc. He is able to get an erection and maintain it and has ejaculated on 3 occassions...very exciting. He used to get spontanious erections that never lasted, now he can get an erection by stimulation. He gets sensations in his legs...but these sensations come and go. He is able to regulate his body temp. much better now. His knees lock into place when he trys to transfer. At night when he is sleeping his legs seem to move up and down...let me try and explain...one leg comes up(with knee bent) while the other is flat, then that bent one goes down and the other comes up with knee bent and the otheris flat...it's kind of funny because they do this over and over again up down up down...he is oblivious to this. Not sure what to make of this. All in all he is doing well. He is back on the heavy equipment (i.e. bulldozer, tractor, back ho) and just got a new 4 wheeler that he rides all over. Nothing too exciting, but we are encouraged all the same.

[Carl R]

just curious, why is he taking testosterone?

[dahliasinbloom]

Birdie, thanks again for the long conversation we had over the phone last month. It was so helpful...you gave me some great insight into the whole Ecuador experience. I didn't realize then that you were Birdie on CareCure. It seems to me that some people on the forum go beyond skeptical of Dr. Kao and are slightly offensive. I think maybe they struggle with their own decision Not to have the surgery and feel a need to confirm/justify that decision. Thank you so much for all the information you have shared...I'm certain there are many more who quietly go on their way, leaving us in the dark. I wish the very best for you and your family. From what you've told me about Jim, if anyone can recover function from this surgery, it will be him.

Jan

[Curt Leatherbee]

I really get the feeling though that a lot of people who have had this operation are trying to justify that it was worth doing when in fact very little has changed from what they were before. I am a t-4 complete post 20 years and can do everyone of the things that you mentioned Robin, so would I spend all kinds of money and time and take such a large risk of doing my body more harm from such an Operation, the answer is a most definate No!!!

When something comes along that is proven to work, you better believe, I will be one of the first people in line (I would be a great candidate as not many t-4 Paras are in the kind of shape I am with all the training I do) But until that time, I think I will try and stay healthy and enjoy life as much as possible and not risk putting myself in harms way.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[cthompson]

Originally posted by BirdeR:

first of all-we want to wish overtheline3 and everyone else a safe trip to Ecuador and let you all know that our thoughts and prayers are with you during this journey.- Now with that said here is an update on Jim. Although it is still too soon to see or know all the results from having this procedure we are still seeing and/or experiancing good things. We are not sure if these are from the decompression, the nerve transplant, the 4AP, or just "spontanious" recovery. Jim continues to do his exercises and so on, he is up to 50mg. a day of the 4AP, he has not taken the viagra or yohimbine as of yet, he is taking the Proviron (testosterone)-2 tablets before breakfast every day, the Urecholine(25 mg.)(1 tablet 3x a day), and the Dibenzylene(10 mg.) (1 tablet 3x a day). Jim is not taking any pain meds. at this time and has not for about a month. Before the operation he was taking a ton of pain meds. Jim has started his bladder exercises and before he caths he gets on the toilet and applys pressure to the abdomin area and trys to urinate without cathing. He is able to urinate some by doing this (almost every time). He still needs to cath afterwords to make sure that it's emptied. He usually only gets about 50cc-100cc out after this...where he used to get 200-350cc. He is able to get an erection and maintain it and has ejaculated on 3 occassions...very exciting. He used to get spontanious erections that never lasted, now he can get an erection by stimulation. He gets sensations in his legs...but these sensations come and go. He is able to regulate his body temp. much better now. His knees lock into place when he trys to transfer. At night when he is sleeping his legs seem to move up and down...let me try and explain...one leg comes up(with knee bent) while the other is flat, then that bent one goes down and the other comes up with knee bent and the otheris flat...it's kind of funny because they do this over and over again up down up down...he is oblivious to this. Not sure what to make of this. All in all he is doing well. He is back on the heavy equipment (i.e. bulldozer, tractor, back ho) and just got a new 4 wheeler that he rides all over. Nothing too exciting, but we are encouraged all the same.
Thank you for the info on Jim, glad he is better.
Keep us up to date with his progress.
KEEP UP THE GOOD WORK JIM

[Curt Leatherbee]

Is that possible?

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[BirdeR]

We just talked to the college pharmacy people about the 4AP that Jim is taking. As I said before he is up to 50mg. a day of the 4AP-this seems to be a ton of pills he takes a day as they are 5mg. tabs. We are now going to try the time released formula and 15mg. tabs. When they get here, he will only take 1 tab 3x a day, rather than the 2 tabs 5x a day. So, in short he will be at 45mg. a day rather than 50 mg. a day...but these are the time released tabs. Question to others that have or do use 4AP...do you think that this will make any change or that he will see any change? ***************NOTE: We spoke to Barbara in Ecuador on Thanksgiving and she mentioned that Kao has 15 patients this time. My understanding is that they will all be back from Ecuador by December 16th.

[BirdeR]

Today Jim is starting a new exercise program. It's more of a physical therapy program. There is a place that has recently opened in the area that has an aquatic therapy program as well as other equipment and so forth that we think will benefit him. We met with the owner for a tour and the details of his experiance with spinal cord injured individuals. He is quite knowledgable in regardsto SCI and knows more than we had anticipated about Jims condition. Remember we are in a small area and thus far we have not met anyone here in town that has any "hands on" experiance with spinal cord injury. So, Jim is starting this program today. It will include aquatic therapy, massage, weight training, they have a bike for him that he will be using, as well as other therapies that we hope will be beneficial to him. Once he has been in this program for a while, we can share exactly what it's all about. As far as updates on his condition since the operation with Dr. Kao, well, there is nothing HUGE to report. Jim has been really working hard at his exercise program that Kao prescribed and the pain seems to be a thing of the past (knock on wood). He seems to be having a bladder problem...there is no UTI, but he is constantly having accidents. He can transfer on to the toilet and urinate at will, but only in the morning...odd. He seems to have more strength in his left leg, and that is promising. It would seem he has muscle control...ever so slight in his thighs, you can feel this and see this as he flexes the muscles. His abdominal muscles are getting stronger as well. He stands at his walker...(he does not have the boots yet)...but his arms are doing the supporting for the most part. When he thinks about moving his leg(s) you can see his thighs twitch...or flex...but that's not anything HUGE. He seems to get these "surges" of sensation below his injury (in the legs and groin area)...but the sensations come as quickly as they go. They just happen more frequently now. So, we will let you know if and when anything new happens.

[Joe B]

BirdeR,


In November you mentioned that Jim was changing to the sustained release 4AP and would take 3 15mg caps a day instead of two mg caps 5 x a day.

I just wondered if the change to the sustained release 4AP made any difference? How big is Jim by weight? The pharmacists at the pharmacy where I tried 4Ap had a formula for giving 4AP and I remember it was by weight. I weigh maybe 145-150 lbs and was up to 45 mg a day. I believe I had some benefit but not enough to make a difference in my own daily living. Some small strengthening of my hand and fingers, a little better motility and bowel management. Hope Jim continues to see some benefit from his surgery

Joe B
C6-7
1988

[brians]

it sounds like jim is doing great,i am jealous,no urinating on my own or ejaculations....maybe because i am a higher level and complete.how does jim get on a tractor,backhoe,etc.and what has he done to adapt them so he does not need the clutch.which 4 wheeler is he driving

[overtheline3]

hi there jim,it sound's like your feeling fine,that's good.I to had the surgery and feel fine.Can i ask if any feeling has started to come back below the injury?i know how dr.young said it come's back like hair would grow.Do you do the excercise's every day?do you feel like the exercise program has made an difference?and if the censory does'nt come back,how can the program make a difference?beside's keeping you in a little beter shape,maybe you can help me with that one dr.young?good luck jim

[Scribe]

I'm a T-10 complete and I would like to live with at least a ray of hope. But I frequently notice that those whom Dr. Kao has operated on are incompletes. Does that mean there's no hope for me? Some bone shards from my vertabra lodged in my spinal column. My lesion is described as a burst. I was injured March 10, 2000 and do not have feeling or voluntary movement below my injury level (thus I'm complete).

Has Dr. Kao done procedures on complete injuries? I welcome all replies. Be straight with me. I don't think I'll get anything back. However, I'm not asking for much. It would be great to get some bowel, bladder or feeling back. I've been having problems with bladder accidents.

Of course, my dreams would be practifully be fulfilled if I could experience ejaculation again.

I will have the money to pay for a Kao procedure. But is this a pipe dream? Your friend, Scribe

[Scribe]

I'm a T-10 complete and I would like to live with at least a ray of hope. But I frequently notice that those whom Dr. Kao has operated on are incompletes. Does that mean there's no hope for me? Some bone shards from my vertabra lodged in my spinal column. My lesion is described as a burst. I was injured March 10, 2000 and do not have feeling or voluntary movement below my injury level (thus I'm complete).

Has Dr. Kao done procedures on complete injuries? I welcome all replies. Be straight with me. No hope is better than false hope. I don't think I'll get anything back. However, I'm not asking for much. It would be great to get some bowel, bladder or feeling back. I've been having problems with bladder accidents.

Of course, my dreams would be practifully be fulfilled if I could experience ejaculation again.

I will have the money to pay for a Kao procedure. But is this a pipe dream? Your friend, Scribe

[Leo]

Of course you have hope it may or may not be with Kao. I'm a c4/5 since 76 and am sure that sooner rather than later I'll be at least a para and anything beyond thats gravy. Keep your body in shape and hey maybe invest that money in one of these companies that's going to pop when the first break through comes. Then later you can buy me a Bud light. http://sci.rutgers.edu/forum/images/smilies/smile.gif

For what its worth,

Leo

[giambjj]

Many of his patients are complete. After the surgery Dr. Kao referes to them as incomplete, because many, but not, all have some significant recovery. Remember this is not a cure!

JJG http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Scribe]

Are there any completes out there who can feel their ejaculations? Are there any who have gotten back any bowel or bladder control?

Are there other procedures being performed besides Dr. Kao's?

[antiquity]

Originally posted by Scribe:



Are there other procedures being performed besides Dr. Kao's?


Scribe, go to the Trials Forum, Dr. Young lists all the treatments and clinical trials available for chronic and acute SCI.

[Scribe]

Seneca, thanks for the tip. I especially appreciate SPIs willing to help others. Keep caring and sharing

[dahliasinbloom]

Scribe,

I'm a T12 COMPLETE who is planning on having the surgery and happens to live nearby. Give me a call and I'll fill you in on everything. I'm trying to schedule in March. By the way, I read that Dr. Kao has had the greatest success with lower thorasic and lumber injuries (although this information was quite old - don't know if it still applies). Being a complete injury 21 years post, this will be a true test. I have a real good feeling about it.

Jan

[Scribe]

Jan, it's nice to hear from you again. I'll give you a call. As you know, I'm keenly interested in your procedure with Dr. Kao. You should do well with your intelligence, emotional strength and great physical condition. You put me to shame. I haven't taken good care of myself since I left the hospital in July 2000.

Keep us informed with your messages. Scribe

[dahliasinbloom]

Don't put yourself down. There is a huge difference between 21 years post and 1+. It can take years to pull yourself together after such a horrific blow. Your on track...keep the Faith!! Life goes on and it WILL get better.

[Scribe]

Thanks, Jan. I've always been too hard on myself but I've never been been able to shake this personality defect.

[BirdeR]

Barbara called our house this past Friday when I was gone and spoke with Jim - she was calling to confirm her staying with us from Monday to Wednesday. Monday morning we headed to Waukesha, WI to see the Hammer clinic, meet
Kathy Hammer, Barbara, and believe it or not 7 other Wisconsin "past Kao patients". You should all know that there are 31 past Kao patients in
Wisconsin alone. Texas has the most and we are next. The clinic opened about 3 weeks ago and they are still waiting for all the equipment
to arrive. We were all there to see the "walking machine" and to try it out. You don't use the "Kao boots" -or- as Jim likes to call them
the "magic boots" on this equipment as they are too heavy. High top shoes are best (for ankle support). Jim was the last to use this machine which was great because we could watch everyone else do it first. I am sold, as is Barbara!!! This is a wonderous machine and with the
proper use and schedual this may be better then the invention of sliced bread!!!!! Everyone loved it!!! I think we scared poor Kathy Hammer the PT with our group!!! Jim who is so very skeptical about everything and anything actualy liked this as well. Jim was great!!! His legs actualy knew what they were suposed to do or so it would seem (one right in front of the other, knees bending with each step....)!!!!
Kathy Hammer has a list of the places around North America that have this machine (http://www.jsonline.com/alive/news/jan02/10474.asp) and will share it with all of you I am sure. I do know there is one in Mississippi (the closest one to Alabama) and that there is one in the Washington D.C. area. We were told that 2-3 times a week is the max. to use this and the session itself is about 5-10 minutes long-or at least it was that long the day we did it.
Everyone that was there on Monday had leg and/or feet sensations
after using it. It is quite the work out, you work a sweat up!!!
This is not only for para's-quads can and did use this as well. I am told
that a quad may actually bennifit quicker from this. One particular
fellow that used this machine 2 times already had feelings in his
legs for the first time in 5 years that lasted just over 8 hours!!!
Next Jim used a bike-like thingy (I think it's the NUSTEP) and can be
seen at http://www.nustep.com/smart/media/photos.html I'll check into that- any way Jim again was
the last to use this and he did not have to have his feet or knees strapped in
like the rest of the people-his legs just
peddled!!!!!!!! First he used the arm bars that move your legs...and
they asked him to just do it with his legs and not his arms to
help...he said "you're kidding me , right?" but he tried and.....HE
COULD DO IT!!!!!!!!!! Barbara was amazed!!! He could not do it
easily...it took alot of effort but he did it a couple of times!!!
Barbara came home with us and stayed until this morning when we took her to the Green Bay area to meet another patient. She worked
Jim so hard-and he needed it!! He used the boots and the walker. The
walker was way too high for him so she marked it and Jim took it out
to the garage and cut it down. She taught Jim how to use the walker
and he can now stand with it. He can get from a sitting position (in
a chair) and get up to the walker and get balanced, lock the knees
in, and hardly hold on with his hands and it's a miracle!!!!!!!! We
went in the kitchen, as carpet is hard to work on and the kitchen has
vinyl floor. He got up to the walker and he took 6 steps with it and
Barbara in front to help move the walker, and our son behind Jim in
case he fell and me videoing this all!!!!!!!!! PEOPLE- HE TOOK 6
BABY STEPS!!!!!!!!!!!!! I was crying!!!!!!!!!!!!! Barbara was
cheering!!!! OUR KIDS WERE SPEECHLES!!!!!!! JIM WAS SCARED AND
DRAINED!!!!!!!!! His legs have been tingling and surging with an
energy he has never felt before!!! His legs want to move, they do
move when he stands, they want to walk!!!!!!!! THEY SEEM TO REMEMBER
WHAT THEY ARE SUPOSED TO DO!!!!!!!!!! Can this be? Barbara said
that if Jim does this every day, he WILL be walking by summer to some
degree!!!!!!!!! We are going to call Kathy Hammer and see when we can get in to her clinic again. It is about 1 hour and 20 minutes
from our home and 10 minutes from my moms home. I have all the
literature and a CD about this machine. Kathy Hammer can also help with
information!!!!! Jim is out in the living room right now standing
and sitting with his boots and walker...he says it hurts his stomach
more then a sit-up!!! HE FEELS HIS STOMACH!!!!!!!!!!!!!! More to
come later!!!!!!!!!!! Robin
*************By the way Jim stopped taking the 4-AP about 2 weeks ago and is done taking the other medications prescribed by Kao as well. He only had to take those for 6 months and this month is 6 months since he had the Kao operation. We are looking into a herbologist that helped a friend that is about the same level as Jim and also had the Kao operation just before Jim did. He does not have to cath any more as he can urinate on his own and has been since before Kao's operation. We will let you all know what we here.

[This message was edited by BirdeR on February 13, 2002 at 10:23 PM.]

[BirdeR]

This is a picture of the treadmill system that Jim and the others
were on at Kathy Hammer's clinic
http://www.customizedfitness.com/loco.jpg

[etexley]

Birde,

I'm really happy for Jim's progress and will pray for it to continue. Albert Bohbot has individuals walking on treadmills in his clinic, but in braces. I've recently been looking for a tradmill with a very stable set of handrails to practice on. The nice part about the French braces is that they articulate in the knee joints, so as to allow for a person to practice leg extension.

I'm curious why someone hasn't developed a stim aparatus to allow for the walking motion, independent of the harness suspension...

Eric Texley

[Scribe]

Birde, that's great news about Jim.

I visited with Dr. Kao today and he thinks he can help me. I'm a T-10 complete. I got emotional seeing an MRI of my spine for the first time. It was chilling to see the burst at T-10 and a bone pressing against my spine.

I may schedule the Kao operation in March. This is a major decision for my wife because we'll have to take out a home equity loan to pay for it. That's something we're loathe to do but I'm 50, Dr. Kao is 67, and I'm afraid he'll retire before long. He's the only U.S. neurosurgeon who does this procedure.

The best to all of you, Scribe

[angus]

How much does the operation cost?

[BirdeR]

Here is the yahoo site that Kao's past patients and some future patients post and go for information (there is about 40 in the group): http://groups.yahoo.com/group/Kao_Patients/ The entire thing is about $28,000 but may cost more if you are a quad and are going to have the arm/hand surgery as well. That cost covers it all...plain, room, food, surgery, laundry service, transportation, boots, walker, hyperbaric therapy, limited PT, daily messages for patient, the food/room/laundry/travel costs for your guest who comes with. It covers doctors fees, medications and standard tests. We had extra tests and so we brought extra money for that "just in case". It's all cash. Check the group out at the link above for anyone that wishes to know more or hear more.

[overtheline3]

hi there jim,that's great thing's are starting to come along.When you took those step's,where you able to lift your leg's and move them forward or did you have to swivel your hip's?when you say your knee's locked,was it because of leaning your upper body backward's?how much,if any,sensation has returned below your injury site?and is the sensation during ejaculation the same as before?thanks alot,jeff

[BirdeR]

I just would like to clear a few things up in regards to my post(s)
on Jim and the Hammer Clinic and his "progress".

First and
foremost: All spinal cord injuries are differant. What may work for one individual may not work for another.

This "treadmill" that Jim
and the other past "kao patients" were on at the Hammer Clinic, is
not some "magical machine" that has "mystical healing" abilities. It
is not "proven" at this time, and perhaps it may never be "proven",
to improve the motor skills of SCI individuals.

It is "believed", by some experts, that "treadmill therapy following conventional post-acute initial rehabilitation improves locomotive ability". It is my
understanding that most clinics that have this piece of equipment or others that have similar treadmills....are running a controlled
research groups. This is still considered by most as experimental research.

Another thing that I want to clear up is when I said that Barbara said that if Jim works at this he will in some way be walking
in six months.....THAT is Barbara's opinion......she did not promise
this, she really has no way of knowing this. Just because Barbara said this does not mean it will happen, and if it were to happen,
that does not mean it will happen for everyone. Barbara may really
believe this in her heart, perhaps she has seen this happen with
similar patients in the past......it was simply her opinion regarding
Jim, his injuries, her past experiances, and his abbilities.

I don't want to make people think that this will happen for eveyone, hell, it
may not happen for JIM. I think that more then anything Barbara was
trying to promise that there is hope, she has seen it happen, and
nothing is impossible. In my mind there is nothing wrong with that.
She really never made any promises.....she said "SHE THOUGHT" or
that "IN HER OPINION".


Kathy Hammer has made no promises to us. She
has been quite frank, to the point, honest, and sincere. She does
not know what (if any) bennefits will result in regards to Jim and/or
the others and this treadmill. Any comments that she makes or
opinions that she shares are just that....her comments & opinions are
based on her past experiances and her education. Barbara's opinions
are not always Kathy's opinions and vice-versa.

Jim is not sold on
this entire "walking is possible" idea or notion. As I said earlier,
he is a skeptic, and there is nothing wrong with that.

I just don't
want everyone that reads this to go running out believing that this
is the "answer" or that this "will work"......I don't know that. I
am just sharing our experiances, our ideas, our opinions, and so on.


There are many people with a spinal cord injury that have made their
own choices in regards to doctors, surgeons, therapy, rehabilitation,
trials, medications, alternative treatments, and so on. Just because
we chose Kao and this type of therapy doesn't mean it's right, or
that it's the way to go, or that it's for everyone. Simply put, it
was what we chose. OUR CHOICE. Jim and I have made many decisions
in the past and not all of them were "right", not all of them
provided bennefits.


Jim tried 4-AP, we saw no real results so he
stopped taking it. Was that the right decission, maybe, maybe not.
Others have reported that 4-AP has helped them...that's great...we
are happy for them...but it was not really doing much/if anything for
Jim.


It's all about "trial & error" to us. Until the day comes
that "THE CURE" is announced....Jim and I will continue to educate
ourselves about what is available. We don't rule anything out. We
do the research, we talk to the people involved, and we make our
choice. That's all anyone can do really until "THE CURE" is
announced. http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/wink.gif http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

[This message was edited by BirdeR on Feb 25, 2002 at 05:43 PM.]

[thomas]

i've been following some of your posts regarding dr kao, i met him this saturday, and he seemed very anxiouse to get me to ecudor. i would really appreciate some time to speak to you on the phone. i can be reached by e mail- i'll give my wifes,since mine is tied to this user name. it's candlegal9@aol.com. you can leave your phone # or if you prefer i'll give you mine that you can call collect. dr kao gave me names of 4 contacts which i've contacted, and when i mentioned you, he seemed to remember "james" when deanna reminded him. being skeptical, i would rather speak to someone i picked rather than who he gave me. any time you can give would be greatly appreciated. thanks-tom

[BirdeR]

Tom......would be happy to talk with you and "try" and answer the questions. Kao usualy gives 4 or more patient names that are close to your injury level, age, injury date.... Kao has so many names floating through his head I imagine it's hard for him to remember them all.

BTW: He turns 67 on March 1rst!!! Can't tell though.

Deanna his nurse would remember Jim though cause when the surgery was over and Jim was coming out of the anastesia (sp.?) he sat straight up on the OR table and started punching the air...only Deanna was right there and he hit her accidently. Seems Jim could not see because his eyes were swollen shut (12 hour surgery and all)...anyway Jim was a tad confused and out of it and startled......he thought that Kao had blinded him cause he could not see....It was funny to Deanna, she had never seen this happen before.

I will email you our number. Robin

[BirdeR]

I received an email from a lady who's husband is in Ecuador right now. Here is the update:

"We arrived last Tuesday night. The trip was long but
okay. We had a delay in Miami.

Don had surgery on Friday. He did fine. He looks
great and is in no pain at all.

T11 had the cord very compressed. Dr. Kao did a
fusion at this level. Also he decided to leave the
rods in. He shorten them and repositioned them also.

I had decided not to go in but changed my mind at the
last minute. Amazing stuff. I never saw Don´s face or
I could not have stood it. He was in surgery for 10
hours. Very long day.

Everyone here are so gracious just like you said. The
care has been fine. Don is with the PT right now.

Two others, one from Florida and one from Texas have
had surgery before we arrived. The man is doing
better than the woman. She has had real problems with
a drug reaction.
The country is beautiful. Today is the warmest day we
have had.

This morning was a good time to email
folks. We did go to the Equador on Wednesday. Had a
good time. We have met two missionaries and they came
and had church with us this morning. They are taking
me to another market place in Quito next week.

Dr. Kao is fine and so is Deanna. Barbara asked about
you. She told me your rat story. Yuck! I would have
died.

My email at work is off. I didn´t want to have a
million messages to read when I returned. Anything
good going on on the forum?

A young man from Mississippi arrived last night. His
surgery is tomorrow. All together 11 are coming thi
trip.

Don is in good spirits as usual for him. Of course we
know it will take time to see what happens. We are
confident that this was the right decision for us.
Tell Jim hello. I hope he is doing well. Ginger"


So- when I hear more, I will post it....ok?

[BirdeR]

Greg Perry had Kao's operation when Jim did (8/01)

Here is an update on him from one of his local newspapers:

http://enquirer.com/editions/2002/03/03/loc_howard_some_good.html

(a picture of Greg and full story can be found at the above link)


Paralysis will not discourage


Mr. Perry, 29, has been paralyzed from his chest down since he suffered a gunshot wound Feb. 8, 1996, on his way to work.

He was shot twice. One bullet entered his abdomen, damaging his spinal cord and causing the paralysis.

Since spinal reconstructive surgery last August, the Silverton man has been on the long tedious road to recovery.

As each day dawns, his wonders how many steps he will be able to take. One. two, maybe three or four before he gets tired.

"It makes me really tired," he said. "After taking a few steps, I have to rest for almost seven hours. I am in a process where my leg muscles are learning again what walking is."

He said taking steps is the second phase of his therapy. "The first phase was strengthening my leg muscles and standing. I had to stand for one hour, two times a day," he said.

He depends on friends, family and members of his church, the Mount Zion Baptist Church in Woodlawn, to help him with the therapy.

Roy Mangham and his daughter, Darlene, are part of the volunteer corps helping Mr. Perry. They took him through the walking procedure Wednesday night at their home in Mount Airy.

Mr. Perry said he does not have the money to get into a therapy program so he is depending on voluntary help. He has to try taking steps twice a day.

Mr. Perry has plenty of upper-body strength because before his surgery he put himself through grueling physical therapyat home 10 hours a day, six days a week. His mother, Linda Edwards, conducted a fund drive with the help of the Mount Zion Baptist Church Benevolence Fund to raise $30,000 last year for the surgery.

Surgery was performed by Dr. Carl C. Kao, in Quito, Ecuador. Dr. Kao is a neurosurgeon who directs a spinal cord clinic in Washington, D.C.

He said the surgery involved implanting nerve cells into an empty space in Mr. Perry's spinal cord.

"When the empty space collapses, it causes nerve fibers of the spinal cord to be disrupted, causing the paralysis," Dr. Kao said.

He said 70 percent of the people who have the surgery have been able to walk with special boots and a walker.

Dr. Kao's assistant, Barbara DeVine, a therapist, set up the therapy program for Mr. Perry.

Mr. Perry said he is confident that he will walk again. Last week, Mr. Mangham and Randall Mincy, a deacon at Mr. Perry's church, were building parallel bars in Mr. Perry's home in Silverton.

"It costs anywhere from $2,500 to $5,000 to buy the bars. We can build the same thing for about $70," Mr. Mangham said.

Mr. Perry said he needs volunteers. To help, contact him at 791-3477 or by email; ltnbone@aol.com.

**************************************************


Allen Howard's "Some Good News" column runs Sunday-Friday. If you have suggestions about outstanding achievements, or people who are uplifting to the Tristate, let him know at 768-8362, at ahoward@enquirer.com or by fax at 768-8340.

[BirdeR]

Also check this link for another patient update:

Jason Morgan's update:

http://www.airweaassn.org/morganupdate.htm

The events that occurred in June of 1999 (http://www.airweaassn.org/archives/morgan.htm) with my accident in Ecuador have forever changed my life.

I first want to thank AWA, the 10th Combat Weather Squadron, the 160th SOAR (Special Operations Aviation Regiment, Army) and the rest of the guys who have been praying as well as financially contributing to me and my family. The total money raised was over $16,000. And, I had to use every bit of that money to adapt to my new life, which included everything from relocation, to adapting my vehicle so that I could still drive, to help paying for state-of-the-art surgery. I'm now in the VA system which has taken very good care of me from medical to financial.

After my accident, the doctors said that I would never walk again and the paralysis was permanent from my waist down. I refused to believe that and immediately started looking for other answers. Six months after the accident, I returned to Ecuador to have a state of the art nerve-graph preformed less than 20 miles from where I broke my back. In fact I could see the mountain pass where my accident occurred from my hospital window. The surgery went better than expected. Out of 300 of these surgeries this doctor has preformed, he said he has never witnessed any of his patients progress so quickly. I now have full use of my hips, and can lift each knee in the air from the sitting position. I can also slightly extend my leg from the knee and through extensive physical therapy and determination, I continue to progress weekly. It was a unique experience returning to Ecuador and very rewarding. I was able to meet the missionaries that saved my life. Since I was in a slight coma after the accident, I didn't remember the accident at all. One of the men responsible for saving my life was an American Missionary who had been living in Ecuador for over 20 years with his family. They visited me on several occasions while I was in the hospital during the nerve-graph surgery. They brought me many home cooked meals which was a nice relief from the Ecuadorian food. I have been back one more time since then for some minor "tune-ups" to my back. Sometime soon I will undergo another back surgery to remove the titanium rods in my back. These rods are the only thing in the way for me to start walking. In order to balance, and have the right amount of flexibility to walk, the rods have to be removed. Once the rods are removed, I will be able to start stretching and hopefully take my first steps a month or two later with the aid of specially made boots that go just below the knee and a walker. Removing the rods should also reduce the severe pain that I undergo daily in my back and legs.

Since the accident I have remained very active. I've been competing in wheelchair sports such as basketball, handcycling and racing. I've also competed in swimming events as well. In fact in July I'll be competing in the National Wheelchair games in Cleveland, Ohio where I promise to win at least 3 medals, one being gold. I'm also training for the 2004 summer paralympic games held in Athens, Greece. I learned how to SCUBA dive and many other things such as snow skiing. I am currently trying to renew my civilian pilot license so that I can fly for a company called Challenge Air. Challenge Air performs air show events all over the country, flying children with disabilities and terminal illness. The company is already holding a flight position open for me. After my medical is approved, I will need to learn to fly with hand controls and take a check ride. All of it only consisting of about 10 flight hours. I have nearly 400 flight hours total.

I have been able to find life after near death. The first year was extremely difficult. I went from parachuting out of C-130's to riding wheelies in my wheelchair. Also because of the accident, my marriage of 7 years ended. You never know how you'll respond to such a catastrophic event, but God has given me the strength. And, He put wonderful people in my life to help me through it. In mid-December, I married the woman of my dreams. She inspires, encourages, and loves me very much.

I hope to stay in touch with the Air Force weather community as well as the special operations weather teams. I'm trying to get the resources together to do the Web site for the 10th Combat Weather Squadron. I will never forget what the Air Force and the people in it have done for me. It was a dream job and I'm very proud to have served my country in the Air Force. I will never forget when I was first injured and spent many months in the hospital in the Spinal cord injury clinic. I was surrounded by military men and woman who were now paralyzed because of the service they gave to our country. But out of all the injured there, I was the only one who was visited by my supervisors, commanders, and people I served and worked with. I was the only one there to receive money raised by not only my unit, but many units throughout the Air Force as well as the Army. Again I will never forget that and I thank all of you with all my heart. I'll make sure and keep you posted. By the way, I'm 32 years old now and I promise you that I'll run a marathon by my 40th birthday.\\

And on 22 February he wrote: It looks as if I'll be taking my first steps within a month. Physical Therapy is going much better than expected, and all the therapists are amazed at my progression. The way things are going, I'll be walking with minimum braces and crutches by summer.

The Air Force and all special operations have been so good to me with their contributions and prayers. I could have never done it with out you all. This is why I want to keep everyone updated at my amazing progression and recovery. I can't wait to walk in the doors of the surgeons who said I'll never walk again.

My e-mail is jasonmmorgan@cox.net

[Max]

Silverton man is an inspiration



Gregory Perry, who had spinal reconstructive surgery in August 2001, spends his days exercising, walking and talking by phone to people around the country who are interested in the surgery and his progress.

The 30-year-old Silverton man was shot Feb. 8, 1996, causing a spinal cord injury that left him paralyzed from his neck down.

Dr. Carl C. Kao, a neurosurgeon who directs a spinal cord clinic in Washington, D.C., performed the surgery on Perry.

"I have been getting calls from people from Detroit, Chicago, Minnesota, New York, Texas, Alabama asking about the surgery, since they read about it in the Enquirer," Perry said. "I have become a morale booster for them. I tell them to stay focused and have patience. I let them know that you cannot recover from this kind of surgery overnight.

"Some of the calls are from people with spinal injuries and paralysis who want the surgery. Some have relatives or friends who want the surgery."

He said some callers want to come to Cincinnati and exercise with him.

He figures he is now walking close to two city blocks and thinks that is great progress.

"I take about 325 steps a day, and it is just as hard taking the 325 as it was taking the first step a year and a half ago. I have a long way to go, but I will never give up. I made a promise to myself that I will walk again, and I will spend the rest of my life striving for that goal," Perry said.

His walking is done with special boots and a walker. He said walking takes his exercising to another level.

"Exercising is easy compared to what I have to do to walk. It takes everything out of me. I take three or four steps and then I have to rest," he said.




http://enquirer.com/editions/2003/02/27/loc_goodnews27.html

[joffrep]

Dr. Kao make a surgery to my father like 12 years ago, my dad was the 1rst. person who operate this Dr. in Ecuador. We were contact him looking for a miracle. Dr. Kao only wants money. He show us 12 years ago, videos with persons walking after his surgery.We never ask for his names, phones, we never talked with those people,we trust in every word Dr. Kao said to us. BIG MISTAKE.My father after his surgery is in the same way before surgery.If this Dr. show you pictures,videos, ask about names, countries,phones, talk with these people first.FOr us, my father after surgery was in the same way before. Dr. Kao is a terrible lier, he only wants money. We pay him like $20.000 include a pair of boots.My name is Joffre Palacios, sorry about my bad englis.If you want more info call me +59391897911 or email jp@imexpal.com
For now, we don;t now any person in Ecuador who can walk after Dr. Kao surgery!

[keeping on]

Figures. these fly by nighters are praing on the desperate, like us. Let's hope this year real credible results will be announced.

[Chris Chappell]

Now, this is a thread from the past, I remember the discussions well. Quite the charlatan Dr. Kao..

[skeaman]

has any one came a cross Dr.luis Geffner in Ecuador . doing stem cell work