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.

[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.