United Brachial Plexus Network, Inc.

Wow thats pretty interesting, I just found this site and my BPI has been 11 years as well, I was thinking the same as you, that after this long nothing more could be done. 9 months after the accident I had flown to St.Lois to see a doc about a nerve transplant, but was told my injury was just to severe, and there wasn't much to be done, but they still tried. I figured after all this time that nothing could bring the muscles back from not being used for this length of time. So where is this doctor your talking about at, and is there a link or anything online about this operation you can give me?

-Mike

Hi Mike,

A number of people have warned me to get a second opinion.

I posted Dr Nath's proposal on the UK's TBPI site and got some more interesting comments (both pro & con).

http://adultswithbrachialplexusinjuries ... topic/2214

That said, I think it's worth checking into.

Everyone has been incredibly helpful, and after all the feedback I don't think I could make a decision until I talk to the team at the Mayo Clinic.

It sure is amazing the way medicine is advancing though. There might be an opportunity right now, but if not, maybe soon

Thanks alot for the info Heddip, It's been 11 years now just like you, and the other night I decided to do some research on the net about BPI, I'd really like to see if theres been any advancements in the time since it first happened.

For me my BPI was doubly hard on me, in my accident I not only hurt my BP, I crushed 3 vertebra in my spinal cord(T12, L1, L2), I lost all use of my legs from my knees down, I kept about 50% of my quads, and about 15% of my hamstrings, so as of now I'm wheelchair bound. So I got 2 paralyzing injuries at once. If I still had the use of my right arm I know I would be walking now, I would have been able to do it with crutches. I also would have been able to drive a car, which I really can't because of only having use of the 1 arm, and no use of my feet, now there are systems for cars that would allow me to drive, there joystick systems, but even a cheep 1 runs about 20k, and thats not including the car. So as you can see getting back some use of my right arm would drastically improve my life, so I hope something can be done. If nothing can be done now, hopefully stem cell research will come around.

Mike

Wow Mike, that sounds like a serious blow you were dealt!

I would definitely look into the options--it does seem like a lot has changed in the last 11 years.

I'll let you know if I get any more info.

This might not interest you, but there is a man I see around that has a reclining bike that he pedals with his arms/hands only. I'm sure it would be incredibly hard to do one-handed, but could be fun to try.

The Challenged Athletes Foundation helps people get the gear they need to be active. I bet something could be made for you if wanted it.

Sorry, I'm always trying to spread my obsession

I had injury June 4th BPI. Avlusion C7 T1. No use of right arm. I have a consultation with Dr. Nath tomorrow. I was wondering if you are still working with Dr. Nath and if you have had a second opinion. I could keep seeing surgeons for opinions but how do I decide. I tried to go to Mayo when I found MX rider surgury article but they will not see me as I was hit by a car while on my motorcyle. Need to make a decision as they say I need surgery as soon as possible.

I haven't gotten any second opinions yet, but am working on getting into Mayo.

Was the reason they declined you related to insurance?

Mayo said they would not take me because my injury was caused in an auto accident and their doctors don't want to get caught up in legalities if there are any. The accident was not my fault and even though I am not pursuing legal measure. They are not willing to take my case. My visit with
Dr. Nath was informative in that he believes that nerve transfer is the only alternative that I have to gain any use of my arm back. I have only 1 nerve avulsion in C7 and will be going to Stanford for a second opinion. Have you had any surgery yet?

No, when I had my accident they didn't do nerve transfers yet, or at least my doctors didn't know about it.

I just found out about this option recently, but want another opinion to see how realistic it is, since it has been 11 years since the injury. I don't want to go through all the pain & expense to just be able to move my arm an inch.

Since your injury is recent, your muscles might not have atrophied as much, so you have a much better chance of any surgery working.

Hopefully someone who has been through this can give you more information before you make your decision.

Best of luck!

KKSantaBarbara~
Why won't Mayo see you? I would try to contact them again, unless there is some other reason that is not expressed that would prevent the hospital from admitting you. My injury is much like yours, complete avulsion of the nerves in the left arm after a major motor vehicle accident involving my car and several large trucks. I was in a wheelchair when I first went to Mayo. I didn't have nerve transfer surgery until 6 months after my accident because I was so out of it with other injuries, and I also wasn't really aware of the severity of my arm injury or it's likely permanancy. My doctor referred me to UCSF, but it was my dad that found out about Mayo and from what I've learned since Mayo is really the best and most comprehensive hospital for brachial plexus injuries. You should certainly try to contact them again.

Have you been to Stanford yet? My son just had surgery at Stanford. I am pleased with the Doctors I just want to make sure I am doing everything possible.