United Brachial Plexus Network, Inc.

Some of you know me, my name is Joe Alsbury my mom visits this site often. My accident will have happened 5 years ago this June, and I've been thinking alot about how bad I really don't wanna live with my arm like this any longer. I look to join my colleges baseball team next fall. I played on my high school team my senior year. My question is has anybody ever had their arm amputated, and do they regret it? I'm really starting to get frustrated with my arm. I think in the end it would be easier to amputate and move on with my life. I'm done with surgeries, and I'm very stuck on that decision. I'm 20 years old and have had over 15 surgeries in my short life for various things from a cleft lip to my TBPI. I'm done with surgeries I just want to know if anyone has amputated and if they regret it at all. Thanks for your time and your responses I appreciate all the feedback.

Sorry bout that didn't see the first one pop up thought that it didn't work. Sorry again.

Hi Joe,

I wish I could remember how far back it was, but there was a fairly long thread about amputation sometime ago. Maybe a "ubpn person" can help us with doing a search for it. I'm pretty sure I remember that nobody regretted it - and, like you, they seemed to have put a lot of thought into the decision.

Sounds like you've been through a lot. It's great you plan to play baseball at college. (Did you see the thread pretty recently about that?)

Take care,

Ellen

Hi Joe here is what I found back on the massege board I think this guys can talk about the topic it was in page 52 Aug 2003

This is from Jacko
Since amputation is being discussed again, I’ve gone back through a previous post and updated it to use here. Sorry if some of you have seen some of this before, but there are a lot of people out there who haven’t.

It’s now 1 year since I had my right TBPI arm amputated. The quality of my life has improved beyond belief. I feel liberated.

Clothes are easy to get on and off, and when I go scuba diving, it is so much easier to get the heavy kit on and off. The same with a rucksack. When I ride my trike, I do not have to spend 5 minutes or more trying to force my hand down the sleeve of my leather jacket or waterproofs (well I do live in soggy Britain). Driving a car, the arm does not now suddenly slide off my lap and get caught between the seat and the door (between the seat and gear lever for those of you who drive on the wrong side of the road !)

I now have more choice of clothes. Elasticated cuffs are no longer a problem. I can wear short sleeved shirts without turning my BPI arm into a piece of crispy bacon ( occasionally we have sunshine too, in the UK ).

Swimming is now much easier now that I am not dragging around an anchor. Before my BPI, I used to really love swimming fast, then suddenly I didn’t enjoy swimming at all. Now I’m starting to enjoy it again. I’d like to be able to get out of the slow lane, and overtake all the old ladies who seem to only use the pool as a liquid social club, so as my fitness builds up, I have a target. The middle lane !

Best of all, my hand no longer gets icy cold in the winter. Before the amp, I used to dread winters, even the British ones which are not particularly severe. Now I have no problems at all.

Don’t even think about amputation until you’ve given your body a chance to start repairing itself. Amputation WILL NOT remove the pain. You need to deal with the pain first and then, and only if there is no recovery after say 4 years, discuss amputation with your consultant. I don’t want to sound like a schoolteacher here, but amputation is the final solution, and may not be suitable for everyone. I’d had a trauma BPI for 5 years, and there was no chance of recovery, even after umpteen operations, so my consultant agreed that amputation might be a good decision. Some people regain a lot of use after 2 or 3 years, and the pain can decrease considerably.

I found that I weaned myself off any type of painkillers as soon as I possibly could, and battled with my mind and body to fight the pain. After my BPI, I vowed that I would not live my life on pills, and fought through the pain. Every time I had really bad pain, I used to ask my body "is that the best you can do? That's pathetic. Come on, try to really give me pain. Sometimes my body would oblige, and the pain would take my breath away, but after a while, my body said, "OK, you're a nutter, I can't fight you." Three years post BPI I was not taking any pain relief. When I went into hospital to have my broken leg repaired I took no pain relief. And when my arm was amputated, I took no pain relief, except one afternoon when I had a paracetemol (I think they’re called Tylenol in north America). I've built up my tolerance, like those people who enjoy fighting, except I'm fighting 24 hours a day against my own body !


I am not trying to convince anyone to go down the same route. It’s a personal choice for each and every person. But if you are in a situation where there is no realistic hope of recovery, and the subluxation creates pain, then it is something to think about. I don’t regret my decision.

Some people are concerned about the visual implications of losing an arm. Personally, I feel happier with no arm than with a withered arm and clawed fingers. I have tried wearing a false arm. It is only cosmetic, but even so, with a few locking positions for the elbow, and a small amount of grip in the hand, I should have been able to do more with that than I could with my BPI arm. As it happens, it’s more trouble than it’s worth, putting it on, pushing it down through shirt sleeves, taking it off, etc. I don’t wear it much at all, but at least with a false arm I have the choice.

Francine asked me for more information about about false arms. This was my reply:
I am no expert, but there are 3 main types of false arm:
1) Electronically triggered by nerve impulses. These are mainly still in the research and development stage, and are in any case, prohibitively expensive.

2) Cosmetic. Basically a latex glove shaped so much like a hand and arm that you cannot tell the difference from more than a few inches away. This has a lightweight aluminium core that has a hinge at the elbow. It is moved into an appropriate position by the other hand, and locked into position by a little spring loaded button. The whole thing is attached to a hollow form made of lightweight plastic which slides over your stump and is held on with straps across the chest.

3) A mechanically operated arm and hand. This is strapped over your stump again, and is controlled by a clever system of levers, pivots, springs, hinges and cords which are in turn controlled by movement of your unaffected arm and shoulder. It sounds bizarre, but can be very effective, by all accounts. Most of the mechanical gubbins is hidden inside the false arm.

I have version (2), at the moment, and as I said above, I don’t really wear it much at all. I have a feeling that version (3) would have me twitching and flailing like I was having a fit, until I got used to it. Also, it must be slightly heavier.

If you type "cosmesis" into a search engine, it will head you off in the right direction. The major player in the game in the UK is a company caller RSL Steeper. http://www.rslsteeper.com


Brits, and people looking for help on the European side of the pond can find extra support and advice at http://pub28.ezboard.com/badultswithbra ... usinjuries

Best wishes whatever you choose.


Ps. For the original thread, go back to page 6, 11 June 2003. I did add to another enquiry about this topic, but I can’t find that reply any more.

Jacko says it all pretty well. Especially for one so young as you are. My accident was May 2000 and I was 48 yrs old. I received a R TBPI. I decided to have mine amputated 3 1/2 years later. It is very freeing. Dressing & moving around is so much easier. I never bothered with a prosthesis either. It's also true that it doesn't help your pain much. Mine had lessened enough to only have occational days with bad pain. I'm not sorry I had it amputated, just sorry it couldn't be fixed. You can't dwell on that. You have to get on with living.

You are so young it must make you stop and think long & hard before you take such a permanent step. I pray the Lord will help you make the right decision.

Susie

Hi Joe. I can relate very well to what you asy, I have decided to amputate after 25 years. I am on a seemingly endless waiting list (universal health doesn't work so well in a country with a small population like New Zealand...) so will probably be waiting a lot longer.

Amputation was suggested about 23 yrs ago by my docs, I turned them down at the trime. In hindsight I think I should have done it then, carryoing round this dead weight ll these years has had a bad impact on my back and made me very lopsided. Still, way back then I wasn't ready for it and I don't regret what was the right decision at the time. The part of your post I relate most to is how you want to just move on and get on with your life- I did do that and had no more treatment after 3 years into the injury, it was SO freeing. I consider the moment I decided to forget the arm is when I had achieved recovery.

I bumped up the main amputation thread for you but here's a link to it anyway, posts move down pretty quickly http://ubpn.org/messageboard/forum.jsp?forum=18
And here's another one you might find interesting about amputation and pain http://ubpn.org/messageboard/thread ... hread=9397

There are a few amputees posting at the UK tbpi site as well as here, I know Courtney is rousing the troops over there so I expect you'll get some response soon.

Take care and let us know how you decide to go.
Cheers Jen NZ

Hi,
I'm thinking of amputation, however, technology is advancing so quickly......who knows......it may may be rectified.

My injury is 9 years old and sure the dead arm is a burden to carry, but I keep thinking I'll cut it and "they" will be able to fix it. You're young, I say hang off for a while...it's off...it's over.

Dom.

I read this board and I listen to the stories and it brings a tear to my eye because I know what the correct decision is. I know that even say "they" could bring my arm back, I don't believe it will be where I want it to be. Amputation sounds like the correct thing to do, and I believe also it will liberate me and lift a large burden off of my back. I sometimes lay awake at night wondering what might have been, and what should have been, but I always come to the same realization that no matter how hard I pray, how hard I wish, I'm this way for a reason, and that's fine with me.

I've had a rough past 7 years(my father died when I was 13), and I believe I have been through the worst part of my life and everything from here to the end will be fine.

In the end I believe the correct answer is that I have to listen to my gut reaction, and the reaction says "Joe it's time to move on, go ahead you'll be fine." So in the end I've talked with all my friends about it, and my mom. Noone said that it was a bad idea and thats all I was looking for. I didn't want my mom to feel as though she had failed me, that this was anyway her fault for my decision.

I have a spanish class to attend here at school I will finish my thoughts later on when I'm back.

Thank You to those of you who replied your input helps alot. I beat the pain (in a way), I'm not looking to destroy any of that. It's just time to liberate myself and be content with who I am and will always be.

Thanks Again,
Joe