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07-24-2001, 12:54 PM
If you have any questions you want to ask me about my operation and recovery just post them on this thread. thank you ..!..
Mel- thanks for your help, you're a great person and friend.
RDF- Is Maynard the pet name you were tagged with when you went to San Francisco.hehe
nothing? not even a tingle?
07-24-2001, 02:47 PM
How long has it been now Bilby...?
Hey billy!! Good to see ya again ..!..
I'm glad you're back amongst the living, billy. Melly said your puter was down for awhile. And no, I didn't get maynard in SF, melissa calls me that nonstop, so I figured I could either argue with her forever, and lose in the end anyway, or just give in and live with it, hehe.
How's your health? Are you back to normal in terms of stamina and whatnot? You did a brave thing billy, we all owe you a debt of gratitude for being one of the first to undergo a trial, for if there wasn't people like you, we'd all be sittin around forever. Thanks buddy.
http://sci.rutgers.edu/forum/images/smilies/cool.gif \/ http://sci.rutgers.edu/forum/images/smilies/smile.gif
ps. great site Wise, much much better than ole cando, for sure. Thank
what about you dmit, any changes in you?
07-25-2001, 06:21 AM
What is the schedule of your return to the clinical for follow-up examination and MRI? c
07-25-2001, 11:22 AM
thanks billyd. i hope you're having fun today at the track checking out all the cute girls...hehehe
you're right maynard, you would've lost anyway...lol. you're just lucky maynard is such a chill name.
07-25-2001, 04:12 PM
are you back to full speed yet? How are they evaluating your progress?
07-26-2001, 01:54 PM
Maynard- I feel fine now. It took me a couple of weeks to regain my endurance because I spent 10 days in bed without exercise.
Whether I was Brave or stupid all depends on how you view it. I wouldn't recommend anyone else to do it.
Come on, don't hold out on us, you earned your nickname in San Fran.
Dr. Young- I had follow up visits once a week for the first month. Now I go once every month for 6 months. I've had three MRI's so far.
Da- I have chronic pain in my legs, feet and hands, so I have a burning tingle all over. Progress for me would be when I no longer have these sensations.
Mel- Saratoga is wonderful this time of the year, alot of moving scenery.hehe The horses were ok too..!..
Dr. Young can you add one more message icon for me- ..!.. it would save me some time. thank you
07-26-2001, 03:02 PM
bilby, I am trying to find out how I can add new icons. It is possible. I am not sure that I understand, however. You would like the exclamation mark with two periods before and two periods after? Wise.
07-26-2001, 03:25 PM
Bilby in time and then feel that it was worth it. Nerves grow at a very slow rate, so it could be six months to a year before there are any noticable gains. In the meantime, I wonder if FES might help you or possibly that new Robot trainer that is now being used? The Robot trainer moves the legs so as to simmulate walking to attempt to retrain the spinal cord, this might be good for you as if there is regeneration going on, it could be enhanced. Talk to you're Doc about these options.
07-26-2001, 03:43 PM
Curtis, your post raised a very interesting question. When can we expect to see functional return after a stem cell transplant. There are relatively few guides and let me summarize.
John McDonald's study of embryonic stem cell transplants to rats with contusion injury (the cells were transplanted at two weeks after injury) began to show responses within 2-3 weeks after transplant. This was presumably due to remyelination of demyelinated axons at the injury site. In a second study, he showed that the myelination occurred in mice within a few weeks. There is of course the question of rat time versus human time. In general, a rat has four time faster metabolism and growth than humans. So, if we adopt the rule of thumb that a rat month is equal to four months in a human, one might expect remyelination induced return to appear about within four months in people.
Regeneration time, as you say, is much longer. Not only do human axons grow slower than rats but they have much longer to grow. The typical rat spinal cord is about 10 cm in length, compared to 40-50 cm in human. Because both growth rate is slower and distance is longer, one would expect substantially longer recovery periods for axons to grow the entire length of the spinal cord, i.e. 16 times slower in humans compared to rats.
On the other hand, many of the axons don't have to grow that the entire length of the spinal cord. For example, if one is injured in the cervical spinal cord, the distance that sensory axons have to grow is much shorter. Likewise, if one is injured in the lower thoracic cord, the distance that the motor axons have to grow to get to the motoneurons for the legs will be shorter.
In most of the rat experiments where some kind of functional return were observed in rats after treatment with regenerative therapies, it took 2-3 months. Thus, one might expect some recovery in 8-12 months and it should continue for several years.
07-26-2001, 05:33 PM
hi billyd, i'm glad you at least looked at the horses sillyhead.
i think i found something that belongs to you... http://home.graffiti.net/melliska/graphics/bill.gif ...hehehe
07-26-2001, 05:39 PM
Bilby this might work :thefinger:
07-26-2001, 05:56 PM
Won't work here http://sci.rutgers.edu/forum/images/smilies/confused.gif
07-27-2001, 12:16 AM
Bilby, why wouldn't you recommend this procedure to anyone else? Are the benefits versus the surgery/pain/inconvenience not worth it to you?
07-27-2001, 01:52 AM
When these experimental rats recover function, and are able to use there back legs again, could it be that the results seen in the lab actually are being reported too conservatively? The reason I ask, and the reasoning may be a little abstract, but there does not exist to this day (as far as I know) any physical therapists who are trained to work in the field of rat rehabilitation. So instead of using physical therapy rehabilitation methods to obtain the rats full functional potential, these rats are having to relearn how to use their legs, and everything else, on their own
[This message was edited by Mike C on July 27, 2001 at 07:05 PM.]
07-27-2001, 10:59 AM
i would think it would be INVALUABLE to use a Parastep or similar system to retrain muscle functions....rather than just MOVING the legs, why not CONTRACT the muscles? I would imagine this will be an INVALUABLE cross therapy for rehabilitation.
07-27-2001, 03:47 PM
It is something that we have been a little worried about, too. But, several groups have been studying it. In Ascona and in Montreal, I saw several talks on the subject. One group (I think at U. Florida) is actually putting the rats onto a treadmill and training them for an hour a day, comparing them with rats that are just handled and put onto a flat surface. I think that they were seeing some differences. It is certainly something that I am very concerned about for clinical trials. Melissa Holley, for example, is going through quite a lot of rehabilitation and physical therapy. Many people are beginning to think about standardizing the rehabilitation after a trial. It is not easy and very expensive proposition. Wise.
07-29-2001, 05:53 PM
Curt-I'm going to start fes again but I'm not familiar with the boots. I do therapy every day, I want to be prepared if it works. I wish I could use a treadmill, it would probably be the best therapy.
Seneca- I wouldn't recommend anyone to under go the same experiment because 5 people have already done it. I'd wait and see if it was successful before I'd make any commitment.
As far as the pain goes, it's to be expected, I have a six inch scar on the back of my neck, it wasn't a simple operation. They had to remove a lot of scar tissue, (calcified tissue or cement as my doctor put it.hehe) it really irritated the hell out of my chronic pain. To tell you the truth, I wasn't the best candidate for the experiment, unfortunately they came to that realization too late..!..
Dr. Young- I had real bad spasms before the operation, afterwards just a few twitches until a few days ago. Now they are worse than ever. Can you give me any explanation why they left and came back, it would be appreciated.
07-29-2001, 06:04 PM
You were brave enough to give it a shot man.That makes ya hero whether you know it or not.Good luck and all the best to ya..
07-29-2001, 06:34 PM
You may want to try using Imagery at least a couple times a day, that is pretend you are running along a beach or a field and keep trying to move every part of you're body that is paralyzed, this may assist in the nerves finding their proper targets.
The other thing worth consideration is Hyperbaric Oxygen treatments, this could also aid in the healing process. Maybe Dr. Young would please comment on both these ideas, I know Hyperbaric O2 was discussed recently, but I believe especially in you're case Bill, it might be worth a try. Shaun is right that you are a hero, if this procedure helps out others you will have been the pioneer. It took a lot of courage to go through what you went through. http://sci.rutgers.edu/forum/images/smilies/smile.gif
maybe spasms stopped because of spinal shock.
07-31-2001, 09:27 AM
I had the worst pain in the areas I got the most return later. Like I normally score 5s on my quads and I spent about 3 months on methadone for that pain. Hurts like hell but I will bet it is worth it. :-)
Ditto with the spasms. Sounds like oyu're coming out of spinal shock. Can you get more range of motion or massage? Both help pain and the spasms.
Go Hero!!! http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif
08-04-2001, 08:34 PM
Thanks for the compliment but you're the true hero.
If I do regain any movement or sensation that is meaningful, i'll probably be elated. But the real JOY will be coming to this website and sharing that information with all you guys, just knowing you'll reap the same benefits in the near future will make it that much better.
Dr. Young - I know it's still being debated whether the scar tissue prevents regeneration across the site of the injury, but in my case without a doubt it would of. I don't think my injury is unique, i'm sure others probably have the same problem with calcified scar tissue as I did, in light of this, wouldn't removing the scar be an essential part of any therapy?
08-08-2001, 11:42 AM
I went for my monthly check up yesterday, so I want to fill you guys in on some additional information on the progression of the Diacrin trials.
First-The FDA only approved the procedure for 6 patients in total, three at Albany and three in St. Louis. Secondly, they are having trouble finding a third volunteer for the trials in Albany. The surgery scheduled for the beginning of August was canceled because the person changed his mind at the last minute.
How times change, a few years ago the people of this fine community were screaming for trials to begin, now we have the luxury of choosing what therapy we think will be the best for us, while turning a blind-eye toward the ones we deem unworthy-now that's what I call progress..!..
08-08-2001, 12:23 PM
any changes from the check up? Feeling any difference yet? More pain, less pain?
neither one of you are the hero. I AM THE HERO. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif
bilby you are right. we ask for it, but no one goes. however on the other hand, we all have the same data but we each believe in our treatment we believe will work. i am tempted to join diacrin, but i feel more comfortable in another therapy schedule for the year 9,000,000,000,000,000,000.
I guess I'm kind of out of the loop. Just wondering how, when, and where your surgery took place? Hope to hear that you see some changes real soon!!
08-10-2001, 05:37 PM
Dax- I had modified stem cells from a pig injected into my spinal cord at the site of my injury-c6. It was two months ago, I haven't noticed any change from my pre-injury condition.
08-10-2001, 08:29 PM
are you expecting any return or are they just testing safety of surgery and treatment? have you lost function right after surgery or at all?
08-12-2001, 10:26 AM
Hi Bilby! I keep checking this thread hoping you'll report some changes for the good. Also, I'm not sure I understand what scar tissue you're referring to as having complicated your operation. Was the scar tissue outside or inside the cord. Did it involve the gliar scar, and if so, did they remove it? If not, did they actually open your dura mata to expose your cord, or did they inject the cells through the dura mata sight unseen? Were the cells implanted in the lesion or in healthy white matter (or gray)? Can you steer us towards any publicized studies that showed functional results from this treatment in animals?
Thanks and good luck!
08-15-2001, 06:41 PM
They injected the cells at the site of the injury, after exposing the cord. They removed some of the scar tissue, (I assume it was the glair scar) but not all. If they removed all the scar tissue my Dr. said I would of had a gap of an inch in my cord. Obviously stem cells can't grow in that environment.
The only study I can refer you to is the one done by Dr. Mcdonald.
I took a leap of faith, if it works great, if it doesn't, i'll try again.
You're all going to have to do it someday if you plan on getting better. When your dealing with the spinal cord, I doubt there will ever be an absolute guarantee that a potentail therapy will work. All you can do is wait, improve the odds, and hope your included in them.
[This message was edited by bilby on August 15, 2001 at 09:53 PM.]
08-17-2001, 07:00 AM
Have you spoke w/ the other guy (Charles Detrick) from Schenectady that was the other person who had the same operation. I cought the tail end of him on the local news (I live in Saratoga) the other day. He was saying that he feels much better & has better mobility post surgery.
Hope you feeling great!
08-17-2001, 08:29 AM
"I took a leap of faith, if it works great, if it doesn't, i'll try again.
You're all going to have to do it someday if you plan on getting better. When your dealing with the spinal cord, I doubt there will ever be an absolute guarantee that a potentail therapy will work. All you can do is wait, improve the odds, and hope your included in them." BRAVO Bilby!!! No one could have said it better! You are truely a brave pioneer in the fight to overcome paralysis! You are in my prayers daily, please believe that! You are doing your part and more in this all out war against SCI! I truely admire you, and hope that I will be as brave as you in Ecuador! The CURE will come!
08-17-2001, 10:21 AM
What sort of evaluation were you given before surgery? Did a therapist evaluate you for sensory and motor below your injury? Were neuromuscular recruitment metrics taken with an EMG unit? Have you started any therapy?
08-17-2001, 10:24 AM
I was also wondering if this operation cost you anything?
08-18-2001, 08:51 PM
Birde- Thanks for the compliment, you have a generous spirit. I'm sure you'll be plenty brave enough for your upcoming trip.
I can't believe you quoted me without correcting my poor grammar. You made me a dummy twice over. hehe
Eric-The therapy I do is left up to my own accord-electrical stim, hand cycling, push ups, stretching, wheeling three miles a day (hills included) and standing in my easy stand whenever I can get enough help to get in it.
Angus-It was free, except for the cost of the tv(a small fortune). On my next trip I'll try to find out some information on Mr. Detrick.
I do admire you, living in Saratoga at this time of the year must be incredible. The performing art center, the racetrack, and a sea of beautiful women, what a paradise!!!!!!
[This message was edited by bilby on August 19, 2001 at 12:05 AM.]
08-20-2001, 07:43 AM
I can't get over how much eye-candy there is in toga town! I go to the track a bunch. Mainly to girl watch. SPAC is also a lot of fun. I was going to come down to Albany Med to say hello.... But i heard that you wern't feeling well. When i was at Albany Med i got the tv for free b/c i yelled at the tv dude for ripping these people off. I guess i made him feel bad. I wasn't in a good mood either....Maybe b/c i just had broken my neck....not sure?
Best of luck to you!
08-20-2001, 11:02 AM
that's a great regimen to stay healthy. I think it would be really good for us to collaborate on what we do to keep our bodies healthy. There are so many things that I've learned from my own investigations, that differ radically from what I learned in rehab...it's UNREAL. Sometimes I am convinced that rehab is geared for the convenience of the nursing staff rather than the well being of the patients....
Take care, and God bless you.
10-04-2001, 09:45 PM
Am new to site. My jaw still dropped to the floor. Cant stop reading pigcells? I am very glad to see we got all these new things out and people ready to go for it. I was injured in 1984c6-7 have had 4 cyst operations at Craig hospital lots of scar tissue. Really lost a lot of hope about 6 years ago hapened to listen in on a speach about spinal reasearch it was identical to the one I heard in 84, "in 15 years there will be a cure" figured then it was just a pep rally. But this sites got me dreaming again. Thanks to all of you. Actually got a Dr. on the site. And a lot of hero's going for the cure.
Want to be involved in reasearch. like a guinee pig
10-04-2001, 09:48 PM
keep us posted & Good luck
Want to be involved in reasearch. like a guinee pig
10-05-2001, 06:55 AM
Don't be a lab animal...but realize that worldwide there are now 3 BIOLOGICAL options for people with SCI. Maybe it's a little premature...but any interest in forming a post-SCI tap ensemble?
10-12-2001, 02:32 PM
I am curious...have you considered trying EMG biofeedback after your transplant on your muscles?Diacrin should either provide you with treatments, or buy you a unit. Suggest it. It'd be REALLY exciting to know if you show improvement over time...!!!!!!
10-12-2001, 04:26 PM
Eric- Diacrin doesn't monitor my rehab, the exercise I do is left up to me.
I haven't used biofeed back. But I did try it before, it's a waste of time in my opinion.
I had my four month check up yesterday, I haven't noticed any change.
They are still looking for a third patient. Mr Detrick, the patient before me, says he can feel pain in his legs, it only happens when his son sits on his lap..!..
10-13-2001, 12:52 PM
I disagree with you on your opinion of biofeedback. Doing it would allow the company treating you to get #s to rate how much better you are getting. There have been some real success stories for biofeedback therapy. Michael Utley for instance can take steps in AFO braces. The dude is a quad that can lock his legs..!!! The improvement began when he started biofeedback treatments.
I just think that we need to explore every affordable avenue there is to getting better. I really admire you for undergoing treatment with Diacrin. You're in my prayers....now it's time to get up out of these stupid wheelchairs!!!
02-24-2002, 06:04 PM
Just looking for a general update and whether there have been any changes. Has Diacrin completed the procedure on the initial group? I think they planned to do six.
02-24-2002, 06:28 PM
They completed the 6 patients-trial in October.I post an article about it below.
October 28 2001
Injections of pig cells bring hope to paralysed
DOCTORS have transplanted foetal stem cells taken from pigs into the spines of six paraplegic patients in an operation designed to restore their movement.
The pioneering procedure offers hope to tens of thousands of people such as the Superman actor Christopher Reeve, who are paralysed as a result of accidents. Reeve is keeping a close eye on the experiment as his condition makes him suitable for the same therapy. During a debate on stem cell technology in America this summer, he described how the procedure could help him.
"I suffer from something called demyelination. That means that in one very small segment of my spinal cord the coating, myelin, which is like the rubber coating around a wire, has come off. That keeps signals from the brain from getting down into the body."
Stem cells, he added, could be cultured and injected into his spine to repair the site. "They would know that their job is to re-myelinate. And then the signals from the brain would go down properly, and I would get recovery of function."
The stem cells transplanted into the six patients have already started growing and, it is hoped, will soon bridge the myelin gaps in their spines.
Doctors are still monitoring progress in the patients, but John MacDonald, who leads the research at Washington University, said: "The changes that we are seeing are surprisingly impressive. Five years ago scientists said this was impossible. Now we know it is do-able. It is very exciting."
The operations completed this month follow extensive laboratory and animal testing. The therapy centres on a new technique for regenerating activity in the spinal cord by getting the stem cell to trigger the regrowth of myelin.
"It is about simple electrical conductance. Wire transmits better if it is insulated. The nerve fibres in the spinal cord need to transmit electrical signals but without the myelin wrapping the resistance is too big. The signal doesn't get through," said Jonathan Dinsmore, senior director of stem cell transplantation research at Diacrin, the biotechnology company that is co-ordinating the research.
The problem is that in people who have suffered paralysis, the myelin either does not grow, or it grows incorrectly.
The scientists are using foetal pig cells to grow into myelin and recoat the nerve fibres. Basic stem cells can grow into any form of human tissue, but the cells used in these operations have already developed into immature myelin cells. They are injected with tiny needles into the spinal cords of the patients at and around the damaged area.
"We chose people who were at least a year on from when they had become paralysed because we did not want to interfere with their own ability to recover," said MacDonald.
"It was carried out in the form of a back operation. We exposed the spinal cord at the level where we are going to transplant, then we use a special procedure to put the cells in. We gave up to 10 injections.
"Our aim is to help people regain important functions. If we can restore functions like bladder control and sexual functioning that would be really exciting."
02-24-2002, 08:33 PM
The press release isn't accurate. They still lack the third patient in Albany.
I have an appointment on the 7th of March, i'll find out then on the progress of the patients that have been treated.
I'm still the same, no change.
"The only good Democrat is one that's never elected." James Carvel
02-24-2002, 08:46 PM
I may have the Kao in June. Could Kao do the stem cell injection? Could those of you who have had Kao's surgery convince him to do so?
Scribe, this is a great link to re-read on Kao as it has many other links within that you can follow:
Did you know there is a Yahoo! Group of Kao's patients? I bet they can give you extensive information there.
I don't think he does stem cells but I'm not sure. I do think he's accessible by phone or fax, though: 202-362-6421 (Tel) 301-388-0994 (Fax)
~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~
02-25-2002, 09:11 AM
If I am correct, Dr. Kao has in the past (1974-I believe) published some of his findings about his limited work in regards to stem cells. I had asked him about his thoughts and experiance with stem cells and SCI when we first met...he said that he had done some research in that area years ago and that at that time he was not convinced nor pleased with his findings or that of anyone elses in regards ti SCI.
I guess the way he responded to my questions about stem cells and SCI made me feel that he was interested-or should I say convinced enough- to include that into his procedures. I could be wrong. When you talk to him in regards to your possible June surgery, be sure and ask him about it. He is quite open in regards to patients opinions and if you put together a list of questions or other researchers findings and so forth to present to him, I am sure he would be excited to look it all over and discuss it with you further. He had never prescribed or had any of his past patients use 4-AP until our group that went to Ecuador. Enough of the patients voiced their interest into it and he agreed to give it a chance. It can't hurt to ask him.
02-25-2002, 09:49 AM
Implantation of stem cells is not difficult. The difficulty is getting stem cells, growing them, and making sure that you have stem cells that is safe and what you think that they are.
02-21-2008, 05:13 PM