United Brachial Plexus Network, Inc.

Hi all

My parnter and I just found this site and was wondering does anyone know of any specialists that they can point in our direction for help.
The specialists here have fobbed us off by saying amputation is best.
I had my motorcycle crash nearly ten years ago and have suffered severe pain all those years. I have tried various medications but none work all that well.
I have grinned and beared it most of the time but dont know about any options there might be.
Thanks

Can you please tell us where you are located? Thanks.

Bridget

I'm in Ireland

Thanks

hi there GPZ (are you still riding?) don't assume yr specialist is ignorant about treatment, for serious tbpi amputation is often discussed, the arm hangs like a dead weight and causes spine curvature & other probs in later life. It was suggested to me too 22 yrs ago, i declined...but i now have a very weird spine! The info on this site re surgery is about babies born with a bpi, their recovery prospects are a lot different than an adult trauma patient. Our arms are very much longer for nerves growing at 1 inch per month and our injuries are more often lower or total plexus injuries....only about 20% of tbpi's get much recovery of lower arm/hand arm function. Bear in mind amputation may not help with the pain, either, it seems that the long term pain associated with tbpi may be related to phantom limb pain, ie a build up of nerve impulses which have nowhere to go, that's why medication often doesn't work and many amputees continue to get the pain. There are surgical options specific to pain, i'll try and dig out a link and email you, but nerve pain is a grey area and the surgeons themselves admit it can all be a bit hit and miss. Sorry you're still suffering, i think the pain is the major factor of this injury, you get used to using one arm but you NEVER get used to the pain, and some peeps seem to have it worse than others. Glad you found us, take care :0)

Hello GPZ......don't think I'm much help in the doc department, just wanted to say hi and introduce meself. Left bpi 28 months ago from a work related injury.....stretched nerves.....slow recovery, but good.

I think the pain becomes the hardest to deal with. Super hypersensitivity has affected me the most, but joint pain runs a close second. Honestly, I don't think anything has quelled my pain totally. Keeping my mind on other things has probably helped the most. Some meds eased the edge off a little, but the side effects were just not worth it. I have found that, personally, if I can rest myself and give my arm a decent "time out" it helps a lot. It's not 100%, but it makes it a little more bearable. And I do still have to take tylenol occassionally when nothing else works.

There used to be another guy from Ireland who posted here, but I havn't seen any messages from him in a while......and I can't remember his name. He may have some info about specialist in your part of the world. I'll look around. Glad you found the site !!

George

Hi Pat, i have had my bpi for 3 years now & i was advised to steer clear of amputation by my specialist, he said to me if i had my arm amputated while i still had the pain it would not go away, & i would definately have the pain the rest of my days. for a specialist to tell you that amputation is the best way forward he or she does'nt have much of a clue about bpi injurys, if it was the best way forward every person on this site would have done it years ago, myself included. I see a cycoligist every couple of months to help me with the pain & how to manage it, i don't know where you come from, but your best bet at the moment is to try & get in touch with your hospital & ask them to put you in touch with there pain clinic, i think every hospital has one. Hope this has helped you a little bit.

take care
bigsel

Hi guys

thanks for your comments and advice, although i do know another sufferer from bpi (an amputee) its still kinda nice to know your not the only one if you get my meaning on that!!

I havent seen any specialists in the past few years but my partner and i have recently sopken again about getting or trying for new help.
The specialists here were not much help to me when it happened and didnt offer me any counselling or guidence as what to do next or what to expect after my crash .....so you can see why I'm a little hazey about this subject evn ten years on.......lol
I was on Zydol which was ok for the pain but became resistant to it so now my gp has just started me on Tegretol on a trial basis.
I havent seen much difference as of yet apart the side effects.
Has anyone else here tried it and if you have how did you get on with it?

Nice to meet you all!

Pat

Oh Yep i'm still riding Jennyb
I'd really go round the bend if I thought I'd never ride again.
It's my right arm bpi but I have all the controls switched over to the left....(except for the front brake which I dont have!!)

Hi Pat,
What part of Ireland are you from? We are in the North. there is not a lot of awareness about bpi over here. If you are north I can try giving you some names, if not I haven't a clue sorry.
Heather

Hi Pat,
What part of Ireland are you from? We are in the North. there is not a lot of awareness about bpi over here. If you are north I can try giving you some names, if not I haven't a clue sorry.
Heather