United Brachial Plexus Network, Inc.

Hey everyone,

So I thought I would give a quick update. I had a second opinion in Edmonton Canada (Four actually). One was from my previous pain specialist. His opinion was that there is a real risk of it bringing back the neuropathic pain, although he couldn't predict the severity or how long it will last. This is due to the fact that although it is essentially numb I still have very little feeling in my arm/hand. The other three consultants were plastics surgeons and a physiatrist. Essentially they said it was a reasonable move to make. With current surgical techniques all that can be offered is a muscle transfer to close and open my hand. It would be a long surgery for very little function (or a long ride for a short slide as he put it). They agreed that it was not worth it given the fact that I have already adapted well. So with that said I have been referred to another surgeon who specialises in amputation. Further, I asked about the risk of the neuropathic pain returning and they said that with elective amputation and current surgical knowledge they can minimize the risk of developing neuropathic pain (grafting severed nerves into any enervated muscle, etc...). They also suggested that I get a short trans-humeral amputation which is what I wanted anyways. I will update after my next appointment - which will be in several months time.

Cheers,
Andrew

Hi Andrew,
I am thankful you gave us a up date,
One thing by all the post you got is the absolute fact how much we care about You and the situation your in What you did over time is to get a number of doctors opinion on amputation or possible surgeries. I am sure in the future thing mite change to improve your usage But till then you need peace of mine with coping with your situation of limitation, That Sucks To !! I know all about no help or hope for my limitation but I also know in some cases option is a true option and I respect that to. If in the end you do amputate then at least you will not to ever second guess that you did not try harder enough to save your arm. The emotional pain can out way alot of the limitation issues and it leaves you in a unresolved issue that needs to be resolve for mental health I Think
I hope I said this right???? Sometime saying the right way is a challenge in posting you just try to post things by experience and the last thing you want to do is hurt someone here to.
Tom

Hi Andrew, I think I remember when you got injured, and it's great to see you doing so well. I have in the past done a lot of supporting of people with this injury, and my experience of those that choose amputation has been overwhelmingly positive. Not one regretted it, all commented on how much freer they felt.
I'm not sure how much function you have, I have no use of my right arm (except to hold things against my chest and as a paperweight) and this has been the case now for most of my adult life, I was 21 when I was injured, I'm 54 now. I can tell you that long term a non-functioning arm is a liability, I have injured it without knowing numerous times, my hand and fingers are so clawed and stuck together that if I cover the hand all day, as in winter, it becomes prone to athlete's foot. If I don't cover it it becomes so cold I can't effectively warm it, and the pain lasts days. Carrying the weight of it around has deformed my back, and it looks weird-even frightening. I was offered amputation early on, at the time I wasn't up fort it, I wish I'd done it.
I do worry about the pain that, like you, I currently have under control, and that might be awoken by the amputation. Nobody I know has suffered worse pain afterwards, but it happens.
It is very hard for anyone who has not actually got a tbpi to understand the amputation question, many have never actually seen a person with a tbpi and they don't understand how much more limited our function usually is, mainly because many more tbpi get the most severe for in bpi injury, which is most or all of the brachial plexus nerves ripped from the spine. It is also a fact that the majority of people who get tbpi are young men. Young men do not want to be saddled with something that they will have to look after, like a baby, for their whole life.
Andrew, you have years to decide this huge question, but your attitude is great and I think you'll be fine whatever decision you make. Good luck.

Hello.

I’ve been with my injury for 24 years now and I am handling it pretty well now.
My right arm is completely paralyzed and I live with phantom pain all the time.
Some days are good and some are very bad.
I have been thinking of amputation for the last few years.
The arm is getting in the way and banging it can crack a bone quite easily and I am in more pain than usual.
This pain will last for at least 3 day when it happens and messes up my sleep big time.
I have even seen doctors about amputation twice and the only thing stopping me is that they don’t know if there will be any additional pain due to the amputation.
I have read that 80% of new amputees experience phantom pain after the procedure.
Can those of you that have had it done please chime in.

Thanks, Barry.

Glad you wrote,
Welcome,Here.
I have wonder to why others , have not posted to
I see you have tried to stay Ok , with it all I bet you learned to adapt over the years to do things with your limitation to.
I Had birth erbs with a broken elbow and broken scapula at birth, I am 61 and my good arm got rip up to , driving a semi. but I did have 25 years driving a semi with birth erbs and limited use.
I answer the Amputation question because it May not be the only choice?? Maybe not???
What I do know is , there was no doctor to see for me for my erbs nor help offer from any doctor at 10 years old.
What I hate is Todays flip side , You read the post about, a boat load of people getting the help that is need by surgery , AFTER a HUGE quest of finding a right doctor that can really help movement or pain. It takes years sometime by post to
I wish that the doctors who would say that amputation is a option then sending the person to a specialist dealing in our injury to get any use back or pain control before taking a arm ??? I dont get it
Our injuries our not a like, In some cases, there is no choice to take a arm it happens by post, this is true to.
Glad your here, Hope this helps, hopefully there will be more responding In my life the best nerve pain it a quest to, One thing is fact the longer you have these injuries you do learn Over-Time to adapt, By POst
Tom