United Brachial Plexus Network, Inc.

Hi I am new to this board My name is Alison - I have posted this message on the gen board, but thought I'd spread myself everywhere.I live in SA. I am 32 years old & have a tbpi on right arm side 5 years ago caused by car accident.I still receive treatment & am in loads of pain. This is an unfamiliar injury here in SA - nobody seems to be able to give answers or understand what is going on. I had a C1-T6 injury, & now seem to have lots of probs with C1-C3 & scar tissue. No-one is really sure what happened or why, what where, just seem to thumbsuck & I just wanted to find out more from other people with this injury- rehabilitation (I go to physio 2 x week), & how do you deal with tye pain & the emotional rollercoaster??

Cheers

Ali

Hi Alison, welcome to the board, my name is Sel & I come from Scotland I had my tbpi 3 years ago in a climbing accident. As for the pain' well I can't get rid of my pain either, but I'm used to it now so I just get on with my life & try and not think about it very much, & the emotional side of things was hard at the beginning but if you've got good family support you will do fine, I know my family was great, if it hadn't been for my wife (Carol) & son (Mark) I don't know if I would be here writing this, as at the start of it all the pain was unbearable, but I'm doing just fine now. anyway welcome to our family & hope other people can help you with some of your Questions,

bigsel Scottish tbpi

Hi Alison

I have a right tbpi, from an accident 9 years ago now, here in the U.K. from a freaky street accident. It was hard at first getting used to suddenly being without the use of my previously dominant right arm, but with the support and care from family and really close friends, I came to terms with it pretty quickly.

Now, if it wasn't for the pain, I would not be aware that my arm is flail; it just doesn't feel odd any more, or hard to cope with. After my accident, I think I was so glad to still be alive, that the loss of use of the arm just wasn't important...and it really didn't take long for me to learn to adapt and make the most of it. I have even found a few reasons why having the use of only one arm can be positively beneficial in certain circumstances....honestly!

I gave up on physiotherapy years ago; for me, all it did was cause more pain and stress, but I do ROM excercises at home.....when I remember! It is hard finding information that is up to date and accurate about this injury, but I and others have been researching this subject for a long time now, to put on a website that we are creating for adults who have a BPI.
If you want to know more about this, or just fancy a chat, please feel free to email me; my email address is on my profile which can be reached by clicking on my name (in blue) at the top left of this message.

Take care...

Liz B

Hi Alison, I'm John. I've got a tbpi to the left arm from a car accident in 1989. I wish I could give you better advice about the pain, but for me, it was just a matter of getting used to it - even though it can still get me from time to time. One thing that seemed to help was to keep up with my range of motion exercises. I did therapy for four years and had two surgeries from Dr. Terzis in VA. Have you had and surgery? Just remember the emotional roller coaster is just that. It helps to know though that there's other people riding the same ride. Hang in there

Hi, welcome to here! As for pain many find distraction is the best philosophy cos if you're mind is focused on something else it has less time to bother you with pain signals.. and the emotional rollercoaster, eased the highs and lows with time for me, reminding myself im lucky not to be in a wheelchair or dead is a good wakeup call! Folks here are great ask em what you like, good luck!

hey allison my brother just had a bad car accident and suffered three of the bp nerves pulled out, do you have a third arm that you actually feel pain? my brother can't get the docters to explain anything if you know of this please relay it back.

This is a reply to 'guest'

I have found a little bit of info about bpi injuries and a 'third' phantom arm; seems your brother is not the only one who has '3RD arm' symptom. If you click on the link below, it should take you to the article, if not, email me and I will send you a copy of it.

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

Liz B

Good link Liz, here's another one explaining one way some people have dealt with the phantom pain. This one is about amputees but the theory works for some bpi as well. Peeps with no sensory input from the hand seem to get it, doctors often aren't interested. http://www.chiroweb.com/archives/13/10/25.html good luck!

Hi there, sorry to hear about your brother's accident. I didn't have any nerves pulled out, just damaged, but where the docs don't know. In fact this injury is a dark area in south africa. I have 60% use of my right arm, but sometimes I go through phases of only 20% use. I have found the support on this site wonderful as you will find that there are loads of people who have varying degrees of this injury & have had it for a lot longer..Did you look at the sites that Liz & Jenny posted? I see they have other references which may help your brother find out more & educate his docs...All the best..Ali

hi allison, i can't begin to understand your pain, but my brother just had an accident april 19th and suffered c-7, c-8, t-1, they think c-6 is avulsed too but we are from delaware and nobody knows crap about this! i'm taking care of him and he s in so much pain and they sent himto pain management person who won't prescribe the medicine, my brother never took medicine in hislife and now they think he is taking too much. howdo you sleep? he is afraid he will roll over on his bad arm and won't know it. he is currently wearing a shoulder immobilizer which wraps around the waist with a cuff for the hand, there's got to be something better. he also has a terrible third arm pain, i see him grasping thin air where he thinks this fake arm is, can you explain this to me?