United Brachial Plexus Network, Inc.

My neurologist has been in charge of my BPI injury for two years now. I have regained all of my motion but I am living in CONSTANT pain which limits my the motor function of my left arm. But he just looks at me and thinks I'm just fine. Why don't neurologists and other specialists "get it" with our injury? Is there anyone out there who's actually regained their motor function but severely limited by pain? I'm getting frustrated with my doctor.

Hi there.
Sounnds like we have alot in common.Would you mind if i wrote you at your email?

Sandi, Please please write me!!!

Yes! please please write me. lcvoelker@cox.net

my son had a recent injury. No feeling or movement in his arm. A lot of pain which, to me seems like phantom pain originating in his brain rather than his arm as he has had avulsions. They are giving him percocet 2 every 6 hours and neurontin 600 tid. What has worked for others? Thanks, Michele

I'm with you. I stopped listening to my doctors who still say I need PT. I have full use of the arm but when I raise it or lift anything the pain tells me to stop. I guess its ok to stop using the arm. So what if the shoulder may freeze - the never ending pain from using the arm is just too great to deal with. I rather not have the pain so I choose not to use the arm. I choose to control the pain. I went years using it and enduring pain because i had the range of motion. I dug a deep hole of pain for myself. It took over a year of non use before the pain let up. I have the arm, can use it but choose to listen to my body when it tells me to stop. I doubt I'll get better from this damage. I don't know of any dr's who can help. They did more damage than good. My option today are 3 - pain killers, a Medtronic nerve stimulator, or just don't use it. For now, not using it and not having pain seems like the logical thing to do.
bob

I think it's because many doctors just can't see beyond repairing the function of the arm, they don't understand how huge an impact the pain is, and how long it can persist. Doctors who specialise in tbpi do tend to understand more and often have specialist pain clinics, pain really is the biggest aspect of a tbpi. I particularly don't understand why they don't work more on getting people off drugs. It can be done, the bpi clinic at Stanmore in London do residential courses to help people form mental barriers to the pain and to cope with normal life with a tbpi. That is more use than any amount of function, in my book. I felt imprisoned by the drugs and altho I am not pain free I can cope most of the time. They do have their place but a lifetrime of drug use is not inevitable.
I agree with you Bellis, better a life with less pain if using hurts you. I felt free when I stopped going to PT, which I did 3 times a week for 3 years, I gave it a chance but at 21, felt I wanted to carry on with life, if life was without my right arm then so be it. Being constantly in and out of hospitals all that time just drained me. I have had no use of my dominant right arm for 25 years, my main working life and child rearing years and I managed just fine. What do other people DO with all those arms, anyway? :0)
btw, if you have avulsions, it is very unlikely that a spinal stimulator will work on the pain, certainly not long term. I don't know why some doctors keep suggesting them to people, it seems like some kind of doomed research project or something, feel like a guinea pig, anyone?
Pain free 2006 to all of you :0) Jen NZ

Bellis - I am SO similar to you! I keep using my arm because it's my dominant arm and my natural tendancy is to use it all the time. Adding more drama to the issue: I'm a professional classical flutist (or should I say X-professional classical flutist) and I've been SO depressed over not being able to play. I can play motor function wise to a point, and then the pain overwhelms me and I have to stop. It's very frustrating. I'm taking up native american flute because it involves less direct trauma to my injured arm. And, I agree too with Jenny that meds have to be dealt with. I hate the idea of being on Neurontin and other pain meds forever. I don't want to surrender use of my arm but - as you well said - the pain dictates my motor function, not the other way around. Yuk!!!!

did you have surgery? If so, where?

Be careful of the neurontin as it can cause swelling.