United Brachial Plexus Network, Inc.

Hello everyone

Been contemplating getting the arm amputated. I'm coming up on 3 years post accident with diagnosed 5 root avulsion. I stress diagnosed because my MRIs and myleogram were inconclusive about C-8 & T-1 and I do not have Horners syndrome which is directly linked to T-1 avulsions.

My main reason for getting nerve graft surgery was for the exploratory part. Of course i wanted my arm to be "fixed" but I already knew it was "broken". When Dr. Belzberg tried to see what nerves were still intact, he decided that there was too much scar tissue to determine what condition any of the nerves were in and he wasn't about to try to get to C8 & T1 lest he do more damage, so he diagnosed total avulsion of the brachial plexus.

I have no feeling or movement in my hand plus extreme neuropathic pain, but that pain increases when I squeeze certain parts of my arm and hand. At one of my appointments with him, I asked if it was possible that excessive scar tissue or TOS effecting C8 & T1 could be a factor in why I have the severe pain and have regained no movement in my hand. He said it really didn't make sense but if it looks like a duck and quacks like a duck, it's probably a duck i.e. no movement and really bad pain = nerve avulsion.

The last appointment I had with him, I told him I was considering amputation. He was very cautious with his words. He stressed that you never know what advances are coming in the future. I know it will not give me pain relief, but maybe I could be active again. I just turned 32 and for the past 2 1/2 years, i've just sat on my kiester because of the pain and the arm wieghs a ton. I've figured out when the muscles around my vertebrae get tight, my pain increases accordingly. That's why I sit on my ass. It's not just the lack of use of the arm, it's the burden of lugging it around that causes more pain. So i could wait til my death for this medical miracle or I could do what is medically possible today to give me at least my mobility back.

So if you've read this far into this post here is my question. Before I decide to get the chop, i want to have exploratory surgery again to see what is really going on with C8 & TI. What doctor would you suggest? I live in Virginia so it can't be a huge journey. I'm not looking for someone who wants to experiment on me by suggesting a C6 crossover or a muscle transplant. I just want someone to check whether C8 & T1 are avulsed or crushed or impinged or whatever. i just want a definate answer so i can decide what to do next. I would go back to Dr. B, but I'm not sure he'd do it.

THANX LOVE SUSAN

Hey Susan,

I think about amputation on a regular basis, almost daily, and I have hand function! So I can only imagine what goes thru your mind... I've still got two surgeries lined up for this spring, to improve what function I do have and I feel glad knowing that if all else fails, then the chop is always there.

The fact that you get increased pain when you squeeze some parts of your arm and hand means only one thing in my book, that some nerve is attached to that region. Of course scar tissue will stop anything from getting any where.

I've recently seen a new Neurologist just for the pain aspect of my injury, Dr. Aaron Filler ( http://www.nervemed.com ), and he tried some nerve block injections on my two existing nerves, C8 & T1. Unfortunately the blocks didn't do anything except give me Horners Syndrome for 24 hours. Oh boy, I'm glad I don't have that! The reason I'm mentioning this, is because I've always felt my C8 & T1 where in a mess of scar tissue, because my Clavicle is still way over calcified from my injury and the tissue is still some what stiff around it. Dr. Filler sent me off to get a MR Neurography, which I understand he helped invent. It is an MRI reconfigured to highlight the neural pathways and injuries. With mine we could clearly see Neuromas, swelling or growth that develops from injury and causes pain, on my C8 & T1 and scar tissue surrounding those nerves, which is why we tried the nerve block injections. Not very many hospitals use this technology, I understand it's because it's difficult to formulate and read the imaging, but... Johns Hopkins does!

I'd go back to Belzberg and ask him to get some more imaging done, and talk him into doing the exploratory if the imaging is inconclusive. Maybe even try and clean up scar tissue if he does find attached nerves (what's there to lose? damaging the nerves that aren't doing anything?). If any nerves are attached and there is any axonal connection to those nerves' target muscles, then the muscle plates have a good chance of surviving as well, which means the muscles could recoup if reinnervated.

I know the dissatisfaction and depression that comes because of the inactivity being caused by the ball and chain of a limp arm. It's ridiculous that the rest of your body (and spirit) has to suffer because it! I'm heading off to the Himalayas in a couple of weeks for a month, to get me off my ass and hike and mobilize. I've got a couple of slings I'm going to use, and Fernando ( http://www.frappr.com/?a=myfrappr&id=125232 ) just made me one like his which he's sending my way.

I'm giving it two more years before I truly consider amputation. First I'll get my shoulder fused, to give me back some stability for spontaneous movement. And second, I'm waiting on the Stem Cell Trials that Prof Geoffery Riamsman is currently performing on BPIs in London ( http://www.telegraph.co.uk/news/main.jh ... wstop.html ).

I know a lumberjack back in Vermont that has a BPI (C5, 6, 7,& 8 avulsed), but has grip function from tendon transfers, injured 8 years ago and is very active, because he had his shoulder fused. He says it's the best thing he did, he spent 2 1/2 years swimming in pills and a road to no where than snapped to once he got off all meds and convinced his Dr to fuse his shoulder, which he said was an absolutely miserable experience (total upper body cast for 10 weeks). But now he can move about with freedom because his shoulder's locked stable.

In the end Susan it's what you feel is right, I know my life is on hold because of up coming surgeries and hopes for change, and I hate it. If the tree was cleaned of dead wood, the rest could flourish and grow... This thought has plagued me since day one, and I'm gonna live with it for a while longer, I hope it's the right choice, we'll see. If you cut the dead wood, a good shoulder specialist should know what to do. I'm sure UVA must have some talent. Best of luck, and keep us posted on what happens.

Be well,
Christopher

"Shoppin for Choppin" that's what we are down to Sue?
You know the whole story-- diagnostics on tbpi are notoriosly difficult. Hell Sue, I'm 50yr old, 3 1/2 + yrs post-op and just wrote to Bishop about my spectaclar nerve regeneration of the last few months. I was kinda into the "chop" but now think that I would rather hang on to the "dead weight" as nerves are extrordinary elements that, in reality, no one has a handle on understanding. Besides; if you chop, how will we ever "hang" together?
Onepaw

Susan, if you do "chop" you could be one of the first kids on the block with one of these!!!

http://www.businessweek.com/magazine/co ... 966025.htm

probably have it any color you want...

Had the right arm paralysed with BPI for 25 years.
My own opinion is I never get treated differently because of it compared to the reaction people give to the amputation. Whatever works for you but not for me.
By the way I live to the full. Football,running, mountain biking, Quad rider and car racer so in some respects have it removed would be easier in these areas.

hi sue,
you may have already tried these guys, and i'm new here, so my apologies if it aint anything new, but have you talked to dr. nath and/or dr. winfree (nyc)?

my bf exchanged an email with dr. nath today and it seems that he's really knowledgable and on these boards i've noticed a lot of people have gone to him.

i mentioned dr. winfree bc he is the director of the center for peripheral nerve surgery in manhattan, which is affiliated with columbia, and he had asked us whether pain was the problem, which he thought he could help with even though the injury is 10 years old.

good luck with everything.

pia