United Brachial Plexus Network, Inc.

Hi my name is Andre and I'm 16 years old. I had a nerve graph from my ulnar to the bicep to get to work 2 weeks ago. I have 3 avulsions (c5,c6,c7). Now my doctor, Dr. Edgerton, wants me to have another surgery to get some sensation back and possibly get the tricep working.

I'm so scared at the though of them taking nerves out of both my working legs & working arm to maybe fix my tricep. He said 2 of my fingers might go numb after surgery, and that my feet will be numb on the side. I don't know if this procedure is worth it.

The Neuroloigist, Dr. Kazmarioff, was against me having this procedure a few months ago when I had the EMG. I really am confused about what to do. Can someone help me! They want this to be done next month. And I don't know if I have the will power.

Andre, this is something only YOU can answer. I totally understand how you feel, I made the decision against surgey many years ago and have NEVER regretted it. Like you I was young and I just wanted to get on with my life and come to terms with what had happened to my arm. There are others I know who would have given anything to even have a try at surgery. We are all very different in what we hope for in ourselves and our lives. I think doctors sometimes see us in terms of damaged goods that they might be able to fix, without really thinking about the fact that a person with a life is attached to that arm.
Go back to the doc who was against the procedure and ask him WHY he is against it. Ask the doc who wants to do it what the chances are it will work. Write down the pros and cons for yourself and decide.
Remember also there many procedures that are not very time sensitive and can be done quite a while down the track if you change your mind. You have just had major surgery, it's hardly surprising you have doubts. Ask questions here, ask your doctors questions and go with what your gut tells you.
Good luck Andre I don't envy you this decision. Take care of that arm while it's mending :0)

I saw those dictors at Kaiser 10 years ago and they told me about that procedure. My father is an Orthopaedic surgeon. When I mentioned what they wanted to do, he said without hesitation "No!". The fact that they would tamper with your good brachial plexus to try and fix the avulsed brachial plexus is not safe nor worth the risk. I got the distinct impression that the brachial plexus group at Kaiser was not very experienced. They attended conferences in Geneva every 2 years to discuss new experimental procedures. Again, it was 10 years ago - I asked if they had personally done the procedure or sat in during the procedure. They said no but I could see that they wanted me to be their guinnea pig. I was real uncomfortable with the group. I would go out of the Kaiser network and get a second opinion. I would also, ask the BP group at Kaiser how many surgeries of this kind that they have done and what the outcomes have been. Be careful too that the doctors there will try and sell you on the procedure because they want to gain more experience doing the procedure.

-Rich

In England the cross neck transfer is quite common , as long as other nerves are intact.
I think they use the c7 nerve from the good arm which apparently you can manage without anyway.
the nerve from the leg will numb the foot abit but thats it, and they then attatch this nerve to c7 and feed it thru the neck to the damaged area,this procedure has been used in the UK for at least 6yrs and from what i hear the results can be promising

Why don't you call the Mayo clinic, Dr. Nath, Shenaq, or Kline.

Karlos is right..this procedure is now being used quite frequently now....and very successfully here in the U.K. As far as I know, they use part of C7 cross transferred over to the damaged side. The results can take a while to show, like all BPI surgery, but it can be pretty impressive. It isn't new surgery here anymore, but I also just wanted to say that this surgery will not always be appropriate for everyone with a BPI; patients are very carefully chosen for the best outcome.

Ask as many questions as you can; ask them to put you in touch with people who have had this procedure so you can really get the best information. Good luck with your decision...don't feel pressurised either!

Best wishes
Lizzy B :0)

What I'm most scared about is waking up to weak legs & a weak arm. I don't know if I can handle that. The way he spoke made it seem like getting the tricep to work is a longshot, and even if it does I wont know if it worked for 2+ years.

For what it's worth, John had the contralateral C7 done last February. He initially had a little weakness in his good arm but was fully recovered to original strength pretty quickly. They took the sural nerves out of both legs to use for grafting, and John just has a little numb place on the outside of his feet - not a biggie.

Previous advice you've already been given is the main thing: find out pros & cons, & ask for referrals to other patients this particular doctor has done.

Ellen

Does his tricep work now?

Diargarsm, I think it will be worth but if some good performs the operation. I don't anything about your Doctor, sorry.