A surgery question

[Amy]

I was wondering what the name of the surgery is when they remove a nerve from behind a leg and I guess graft it to the shoulder.

Has any one got any advice about the aftermath of this type of surgery and the pros & cons of it?

Abbie is having this surgery in a few weeks and I am so scared. I have no clue what to expect, or how it's going to affect her.

Any info on the braces they use can help too...
And ALL other things I am forgetting to ask about but should know is greatly appreciated!!!!!

Thanks to everyone and many blessings to all of you!

Amy & Family

[Mare]

Hi Amy
Frankie had that done 13yr ago its part of the primary surgery the nerve taken from the leg is used to repair nerves in the neck or as in frankies case was implanted in the spinal cord wear C5 and C6 were torn out by the root. Back then there was no splint used just bandages to cover the stitches.I'm not sure about now, the surgery went well giving some feeling and movement. After surgery he was a bit cranky he didn't like being wrapped up or the IV but as far as the leg part he was up and walking and playing in the hospital playroom by evening, his leg never bothered him and there have been no side affects of removing that nerve his leg is perfectly normal. Good luck Mare

[lrstuart33]

My daughter had this done when she was about 6 months old (she is now 5 1/2 yrs.) in Iowa. I believe it is called Primary surgery by TCH. Surgery took several hours. Afterwards she had no problems with pain. She was wrapped on a board with her injuried arm lying across her stomach for 3 weeks - I think she got bored more than anything - all she could do was lay there. I was very nervous before her surgery but it was all worth it and I would do nothing different.
She now has no limitation. Hasn't needed PT since she was 1 1/2 years old. Other people have no idea she has an injury.
She is just now asking about her scars on her legs - only because other kids ask her.

Good luck!
Leslie

[Mica]

Leslie,

What an amazing success story!!! No limitations! I'm so happy for your family!

Our daughter just had the primary surgery 2 weeks ago. If you would share, I'd love to know about your daughter's primary surgery and what was done. (Aria had 1 avulsion - C6. She had 5 grafts total and 2 transfers, C6 into C5 and suprascapular into spinal accessory).

Did you do e-stim, or any special therapies to help your child reach full healing potential? Secondary surgeries? We would greatly appreciate any information you would share!

Again - I'm so happy for your family!!!

Mica

[lrstuart33]

Our daughter had stretches to C5 and C6. They took nerves from both legs and grafted in the neck. We have wondered if she may have recovered on her own if given more time but I will say again that I would not have done anything differently. We didn't want to wait and pass the timeframe for primary.
She had finger and wrist movement at birth. She did get some shoulder movement back but was showing no bicep at the time of surgery - which is why we went ahead with surgery.
The only therapy we did was PT once a week. A lot of ROM at home and our PT stressed weight bearing.
She also had torticollis which was resolved around 9 months.
When she was about 1 1/2 yrs. her PT said she didn't need PT anymore and about that same time her surgeons no longer needed to see her on a scheduled basis. So she hasn't had any secondary surgeries.
Hope this helps. I don't want to give false hopes to all the new parents. This injury has many different levels. Our daughter is a very lucky girl. Her injury was on the lower level of severity even though she had surgery.
But I do want to share her story and let you know that there are success stories out there.

[fortitudine]

I think it's called a sural nerve graft. According to the Mayo docs it works quite well. There may be a small area on the outside top of the foot just forward of the ankle that remains numb, but is supposedly barely noticeable.