Rare Nerve Transplant done 5-27-05

[lclark95]

Hi, my name is Linda. My family lives in Norman, OK. My now 20 yr old son acquired a TBPI to his right arm from a boat propeller injury just over 1 yr ago. His median & ulnar nerves were completely ripped out from his collar bone to his elbow. He just received a nerve transplant May 27, 2005, and I was his DONOR. The doctor is in Shrewbury, NJ, his name is Dr. Andrew Elkwood, he is a Plastic Surgeon, and he is AWESOME!! He took the sural nerves from both of my legs to put in my sons right arm. The nerves were connected to my sons nerves from the side of his neck, down to just below his elbow. The surgery was 6 wks ago, and within the past 2 wks, he is now able to wiggle his fingers in his hand, and indepently raise and hold up one of his fingers!! This is a MIRACLE to us because this is an arm and hand that has been totally paralyzed since the accident. There is much hope now for some kind of recovery even though we have been told there is no way to know how much, and it will never be completely normal. We will excitedly welcome whatever it is!! The sooner this type of surgery is performed from the initial injury, the better the results may be. He begins physical therapy next week, and it will play a big part in his possible recovery. I know there are others on this website that would be grateful for the possible opportunity to see if this same option for a nerve transplant could help you or a loved one. Please let me know if anyone would like more details.

Wishing all of you the best.

Linda

[admin]

Linda - What an awesome story . One question, why didn't the surgeon take the nerves from your son's leg? Best of luck in his recovery!

[admin]

Hi Amy, thanks for your note. Doctors here in Oklahoma took the same nerves from his legs in early Nov 04 to graft into his median nerve. There was not enough of his harvested nerves left to even begin to repair the ulnar nerve. So it took both of my nerves to repair that last nerve...and was just enough to do so!!

Will keep you posted.

[admin]

This is great news! I bet hes so excited. My son is age 12, TBPI from a 4 wheeler accident in 2003. The Dr. used the sural nerves from HIS legs. I always wondered why some Drs. will let people donate and others wont? Anyone know? Also, Linda, did he have avulsions?

[babyryd]

Wow, that's amazing! I can't believe his injury occurred over a year ago and he just had surgery and has such immediate results. I'd love to hear more about his actual injury (specifics ie, avulsions,neuromas, etc), and why your surals were used rather than his. My son Chase (age 7) just had surgery on 6/23 and my husband asked if he could be a nerve donor, but the surgeon said Chase would have to be immunosuppressed which posses other risks. Would love to know more....
Thanks,
Lourdes

[EllenB]

Hi Linda,

I can imagine how thrilling it is for all of you, to see results so quickly! One reason is it sounds like your son's nerves weren't actually pulled out of his spinal cord but were instead broken at his collarbone. That will make a huge difference in the speed & extent of his recovery.

I also had never heard of donor sural nerves. Let us know more about it - like Lourdes wrote, if he has to stay on immunosuppress drugs or anything like that.

Keep us posted, and congratulations!

Ellen

[jennyb]

Here's more info http://www.bernscommunications.com/pr_061104.htm This isn't the same case as it says the surgery was a year ago but it's the same doctor. It does look as though you're right Ellen and that these cases do not involve nerves avulsed from the spinal cord-but still, the donor nerves do give hope to those who lose function simply because there is too long a gap to bridge through the patients own sural nerves. It's great to read of recoveries like this!
Jen NZ

[jennyb]

...actually this one http://atlanticville.gmnews.com/news/20 ... e/018.html does say that the patient had avulsions. Not sure how this doctor is doing this if avulsions are indeed involved, I don't see how the donor nerve could do this. Can't find any details in medical journals or published papers, anyone else found anything other than press releases?

[lclark95]

Thanks to All of you that responded,

No nerves were pulled from Joseph's spinal cord thank goodness. They were ripped out from the distance of his collar bone down to his elbow. The doctor explained that my nerves basically serve as a "bridge" to fill in the gap where his was gone. Our hope is, at both ends of his nerve where mine were connected, his nerve will regenerate over my nerves, and eventually will connect ends, the nerve will then become his own nerve again, and no longer considered a donor nerve. His body will then not reject my nerve...AWESOME, huh?? His immune system is suppressed now though, and will be for at least 8-12 months. That is the down side. However, he is doing GREAT, and the doctor has been continuing to cut back his dosage of immuno-suppressant meds, and with no signs of rejection. Obviously the lower the dose the better. Joseph felt it was worth the risks since it is for such a short period of time, and especially for what the overall outcome may mean for him in the future.

Also, the nerves for a transplant can come from a living donor or cadaver. The #1 criteria is matching blood type, but other factors as well. There is lots & lots of blood testing done with both parties involved to make sure it all works.

Hope this answers a few more questions for all of you.

I will keep you all posted.

Linda

[Kath]

Linda
Thanks so much for posting, I wish your son a great recovery and hope to hear that each day he gains more strength and movement. It must be rewarding for you to be able to help your son this way. It is amazing that this is possible.
Kath ( adult/obpi)