United Brachial Plexus Network, Inc.

Hi, i've just come across this website, after looking for some answers to acute pain i've had for over 2 years now. I've been diagnose with TOS, Brachial Plexus nerve damage to my right side, i was run over by a car 10 years ago, this is the only trauma i can pin point. I've had severe pain, numbness, pins and needles, cramp and nothing subsides the pain. After 5 visits to my GP after been told i had TIETEZE SYNDROME (Inflammation of the costal cartalidges) and there was nothing they could do for me, i've now persisted, changed GP's and after the constant naggin of my other half kept returning to my GP i was finally refered to my local hospital and after X-rays, MRIs's and 3 consultants later i have been diagnosed as having damaged my BP nerves. The consultant hasn't given too much away yet, but has only given me the option of cutting the damaged nerve to relieve the pain, but this will result in loosing tactile sensation and movement of my right arm (I'm right handed and training to become an electrician) I'm gutted, i'm only 24 and feel like my life has come to an abrupt halt! I'm writing to hopefully share this with similar people, and seek a light at the end of a very dark tunnel. i would like to chat to people who are in the same situation as me. Does anyone have a similar experience? I'm in the UK and going throught the NHS, will this limit what they will be able to do for me? I've been reading alot about nerve repair, will this be a viable option for me?
If i loose the use of my right arm after surgery, what benefits will i be entitled too?

I would very much appreciate as many peoples experiences and advice, please feel free to email me:
footymad80@netscape.net

Thanks
Pete.

Pete
I am sorry to hear you have had so many problems.

We have a Traumatic BPI Message Board at this site. There are many people posting who can help you with information and support.
http://ubpn.org/messageboard/forum.jsp?forum=18

There is a group from the UK who have organized and can help you with support and the NHS. I am sure someone there will be able to direct you to the hospital / doctors you need to met with.

http://pub28.ezboard.com/badultswithbra ... usinjuries

I hope this will help to direct you to the medical and emotional support you need at this time.
Kath

pete,
so sorry to hear about your accident. i commend you on your determination to find the right diagnosis. i was diagnosed in 02 with thoracic outlet syndrome to my left side, a year after a heavy door fell on me. i ended up having thoracic outlet decompression surgery where they go in and remove your interior scalene muscle to take the pressure off the brachial plexus. the surgery can be dangerous as the work is done right over your lung, and i suffered a collasped lung because of it.
what the surgery accomplished for me was a reduction of the pain at my shoulder area. it did help for 2 years and i functioned normally and only had small amounts of pain. i still had numbness and some lack of coordination in my fingers but was able to type.

good luck and if you have any questions, please don't hesitate to get in touch. my email is ladydanzia@purplechristel.com

gillian

I was diagnosed last week with tos, and was wondering what you do to relieve some of the pain. It started with a bpi and then tos. my muscles and tendons feel tense... i would love to hear any ideas

a tens unit was beyond a lifesaver to me. also moist heat

I was born with erb's palsy affecting my right arm in 72 never really had a problem with pain until last november when I noticed a lump in my lower right back and was having pains shooting down my right leg, my arm would get cold and numb for several minutes then it would feel like pins and needles and would be extremely painful. Seen my family doctor who referred me to a neurologists. He told me the lump I'm feeling is my hip bone(although I know it has not been there the last 30 some years) prescribed me Gabapentin I am up to 900mg a day. Now I'm experiencing pain and very tense muscles in my shoulders, neck and and right calf. The neurologist says I will have chronic pain the rest of my life and has listed my problem as brachial plexopathy which I knew I had in the first place!!! It has been very frusterating trying to descibe the pain I feel and how it just comes and goes. I was wondering if these are some of the symptoms you have experienced?? God Bless anyone that can help me find answers.

Tracy1072

I am sorry to hear that you are having so many back problems so young.

I am going through a major bout of leg pains but I am so much older.

I move up some posts on the Adult/OBPI Message Board
Reading some of the responses there may help you a bit.
Posting on that board will get you more responses from adults like us who are birth injured.
http://ubpn.org/messageboard/forum.jsp?forum=19


Kath