United Brachial Plexus Network, Inc.

Hi all...I'm 27yo, and live in Australia. I suffered a Complete brachial plexus injury in 1994 as a result of a motor vehicle accident(fell off the back of ute).
In 1995 I had a nerve graft operation, but to date this has had very little effect.
Since the day I regained consciousness after the accident, the docs have been telling me to cut my losses and have my arm amputated and get on with my life. One thing I have found it VERY hard to accept is that in todays era of technological enlightenment, our so called "experts" cant fix a few nerves. I guess theres not enough money, or power, in it to warrant spending too much money on research???
Its now been 8 years and I am very seriously considering amputation. Its very hard to stay fit and healthy when you are limited in what you can do. I think I would rather have one good arm and a stump, than one good arm and a flail arm that just gets in the way. Before my accident I was a sport-a-holic, and I really want to get back into it...especially surfing and basketball. Does anyone else know of any one armed surfers, bodyboarders???

I TOO SUFFER FROM TBPI, AND YES I HAVE CONSIDERED THE SAME. ITS ONLY BEEN ABOUT 1 1/2 YEARS SINCE MY ACCIDENT BUT,I DO OFTEN THINK ABOUT IT, AS FOR THE FRAIL ARM IT REALLY DON'T GET IN MY WAY, ATER ALL I CAN LIFT IT. BUT BEFORE THE NERVE GRAPH I HAD NOTHING. NO MOVEMENT WHAT SO EVER. BUT I DONT CONSIDER MYSELF HANDICAP SOMETIMES I DON'T EVEN NOTICE THAT ONE ARM DON'T WORK, I DO THING TO STAY BUSY SO THAT I DON'T THINK ABOUT IT AND THE PAIN. BE STRONG I JOG, SWIM, AND RELEARNING TO GIDE A MOTORCYCLE AGAIN.

Hi Jamie
I have complete BPI like yourself following a motocycle accident in june 1998. I have regained good shoulder movement following surgery to the auxiliary nerve. My injury was complicated when I contracted MRSA in intensive care, this has ruled out a muscle transfer to regain elbow function. I have read a couple of other poeple on this site and elsewhere who have undergone amputation and have had a new lease of life.
I feel the same as you that running smimming etc would be so much easier. I still ski but don't use poles, we are just back from Chamonix in France a couple of days ago.
Following consultation with Stanmore I am going to see the Surgeon who treated my injuries before my trip there to discuss amputation and what is avaliable in prosthesis on 20 March. I will let you know how I get on.
Cheers Les

Hi there, I too have (and still am) considering amputation, but until I really make up my mind I'll leave it. I'm 23 yrs post injury with no real recovery and the flail arm does get in the way a bit, but somehow I can't imagine life without it. So my jury is still out on the amputation question. A couple of the guys on the tbpi website have had amputation with no regrets. You can talk to them on this message board http://pub28.ezboard.com/badultswithbra ... usinjuries . I'm from NZ and I don't think we have any aussies posting regularly yet altho many do read the messages.
A guy called Rob Nelson used to post here, he does surfing and skateboarding among other things and has made his own flail arm sling out of neoprene for this purpose. Here's a link to a post from last year about this http://ubpn.org/messageboard/thread ... hread=2700 Rob posts as 'ocnsky' and you can mail him by clicking on his name at the top of his post. There's also a website from Australia about adaptations for disabled people in many sports which is in the post from Dave m in this link http://ubpn.org/messageboard/thread ... thread=683 We have a pic of Rob skateboarding on the tbpi site along with various pics of a few of us not letting the arm stop us dong what we want, it's on this page http://tbpiukgroup.homestead.com/Community.html in the section on the right called 'No problem'

A fair bit of info to digest there, sorry!

Research into tbpi? There's a doctor in the UK working on reimplantation of avulsed nerves with some success. This needs to be done within hours of the injury happening to work tho....research on growing new nerve tissue etc is ongoing but unlikely to affect us in the near future. to be honest, even if this was available now, I'm not sure I'd do it, I've just got used to living life one handed and have no desire whatever to go back into a hospital and start all that therapy etc again......but that's just me!
All the best, hope you get up there surfing again....would you call it 'Hang Five' with a bpi?????:0)

Lust
I am 16 months post wreck and have already talked to the Docs about amputation. I don't believe they care much for the idea, as it is akin to admitting failure on their part, but then- it's not their arm.
Like you I was intensely athletic and worked out nearly everyday before my injury. The truth is that now I would give nearly anything, including my right arm, to be able enough just to ride my horse again, and if I thought for sure that burning my right arm would get me there, or at least closer, I'd saw it off myself.
But I'm not sure so any imput would be greatly appreciated.
Onepaw

you need rhino skin if your going to begin to walk through this world
You need rhino skin if your going to pretent your not hurt by this world
You need rhino skin if your going to get to the end of the maze of this world
Tom Petty

Onepaw, I ride most days, I have no functional use of my arm. I ride English but maybe when I get a bit older and less flexible I'll try Western, looks like it was made for us one arm bandits. Having said that, I don't have the subluxation, I've been really lucky there. Best of luck with your decision about the shoulder fusion, and if you want to talk horses mail me anytime :0)

sorry onepaw, I meant amputation, not shoulder fusion....:0)

Hi Onepaw
I have just had a visit to my surgeon to discuss amputation and we have decided to go for it. I am four and half years post motorcycle injury and have explored all my options with Prof Birche at Stanmore UK. As I picked up MRSA in intensive care my options were very limited a muscle transfer etc has been ruled out.
Have you explored muscle tranfer yourself, as maybe 16 months is a bit soon. I know someone who has has the proceedure done succesfully and he has regained elbow flexion, a big boost.
I know exactly how you feel I used to race bikes and had to prety fit, post accident it is very difficult to run and get motivated to exersise (sometimes I think I use my injury as an excuse to be lazy !) I mostly cycle, ski and walk but feel so many posibilities would open up without the arm.
I had a look at prothesis at the clinic, the UK national health ones are pretty basic, and are really just cosmetic but I am centain they will be more usefull than what I have got now.
Feel free to mail me I will keep you posted.
Cheers Les

Bless you...my son has decided to amputate also...three years after his motorcycle accident and two years after reconstruction surgery at Mayo Clinic. Do you mind contacting me at imsand777@aol.com. I would love for you to speak to my son, Chris, as he has wanted to speak to someone who is going through the exact same situation. Thanks!

Angie

I tore all my nerves out. Doctors told me there was no use in surgery so I never had one. I have considered amputation but it scares the hell outa me.
Kyle