United Brachial Plexus Network, Inc.

hello
my son is 18 and has a profound brachial plexus injury.it has been 5 months and very little improvement
with therapy. we saw a team who rec surgery.We are overwhelmed! please any advice on who is the top docs for this? we will travel although we live in florida.how do we decide who to use? the surgery rec is a nerve graft from his leg and will take 10 hours
(so scary!)please advise thanks

I'm so sorry about your son. It's so hard as a parent to watch our children go through this - not only the loss of function but the pain as well.

My son, when 15, had all five avulsed two years ago. John had surgery to transfer nerves over, as well as to move his gracilis muscle/tendon from his inner leg to his arm. He now has movement, some functionality - and best of all, no pain. He takes a painkiller as needed which is only around once a week.

The below url is part of this website & lists bpi physicians around the world. When you read posts on the boards, you'll also get an idea of doctors who patients are pleased with. I'd strongly recommend you also add the Mayo Clinic (in Rochester, MN) to your short list - they're not yet on the medical resources directory but they did a phenominal job with John.

Take care & keep us posted.

Ellen

http://ubpn.org/medicalresources/

We also have a son who was injured. He came off a ATV and had a severe upper plexus injury. He needed a nerve transfer but did not need a muscle transfer. He has done just great. He can now bend his arm easily and still has excellent use of his hand. They had transferred part of the nerve that goes to the hand over to the bicep muscle.

We had the surgery at Hopkins with Dr. Belzberg. We did meet another family there from Florida. Their son had a more severe injury with all 5 nerves avulsed. That sounds more like your son. They decided to have nerve transfers but staged the surgery including a muscle from the leg. I am not sure how well he has done.

I can tell you that the more severe the injury the sooner the surgeons want to operate. So you had best get him seen now. We are very happy with the care by Dr. Belzberg and his team. Our second choice would have been MacKinnon and perhaps Mayo third. I think any of the experts listed on the UBP site will be good, just make sure you stay with one of them rather than some person who does this once every few years.

All the best and good luck
Mike

Hello ellen ,
you e-mailed me last week and said you are sending a video.We now have an appt with dr.spinner(Im so happy about that!!).im looking forward to receiving the video.What pain medications did john find most helpful?
Thank you for your kind words ,yes watching your child suffer is so upsetting.I look forward to seeing the video.
thank you
sheree

thank you mike we are working as fast as we can.thanks for your input sheree

Sounds like we're on the same track as you Mike. We just met with Susan Mackinnon and are waiting to schedule consult and possible surgery with Belzberg & Redett(end of May, I do like that they try to sched both consult and surgery on same visit). We are also scheduled to consult with Spinner, Bishop & Shin (thanks Ellen!) 6/1. Still unsure where we'll have surgery - how does one decide? Anyway, we're coming from California so it's a big trip either way (especially w/Belzberg).
Ellen, you mentioned Mayo isn't listed on the UBPN resources...why is that?

I can answer that one about why Mayo is not yet listed in the medical resource directory.

It is simply because they have yet to fill out the form. We do not add any doctors without their permission. They keep intending to do so, but have not yet.

We have a wonderful article about the Mayo clinic and doctors and a sidebar article that Ellen wrote about John's surgery coming out in the next issue of Outreach (now at the printers).

Nancy Birk
UBPN President

Hey -

Re Mayo being included on the ubpn medical resources library, I know that there has been discussion about it up there. Mayo is very sensitive about anything that could be interpreted as "advertising" and it's possible that is one factor in the delay - plus the primary liaison doctor has been out of the country a good bit this year visiting other bpi surgeons worldwide.

I'll see if I can "gently" remind them to get the paperwork completed!

Ellen