United Brachial Plexus Network, Inc.

someone who can't post asked to be added to the roll call...US lady got back and scapula injuries after 'rolfing' treatment, had surgery to correct this which has resulted in bilateral injury and scarring of the brachial plexus, plus damage to the neck so she can't swallow, increased pain. Second opinions now tell her the surgery was unnecessary, hindsight is 20/20 so get a 2nd opinion if you are unsure...

Hi! I'm the mom of Dan who has LTBPI received from auto accident 9/29/01. Hoping for surgery to graft or transplant to regain use. I've learned a lot more from you than from the doctors so far. Why, if there are so many people with this affliction, that that diagnosis, treatment and surgery seem so hard to get?

Dori,
I have LTBPI and understand your frustrations. I live every day with the fact US doctors took away any hope of recovery for me. It took six months before I was diagnosed. And then the private insurance stepped in and haulted everything with their we don't have to pay and physicians in this country do not have to see you if you cannot pay. I know doctors need to make money but they also took an oath to help. The US health system has some major problems that most Americans do not even realize are there until they or someone they know gets hurt.
I personnally think the medical community needs better education and training. I to date have seen nine neurologist, two orthopedics, three family practice physicians, two pain management specialists, three physical therapist, and four OTs. Of all these and I still do not know what was damaged in my bp. The reason being none of these with the exception of one has never seen nor even heard of this type of injury. I have been told repeatedly this injury is a fluke. The one exception was the pain management specialist who finally diagnosed me. He had saw a bpi probably thirty years prior when he was first starting his medical career. He actually used a medical textbook to diagnose me. In the end he said he couldn't do anything and refered me back to my primary care physician. My arm's treatment stopped there.
So in my opinion the reason we are at such a stand still in this country when it comes bp injuries is our government who still labels this as a rare injury. In my opinion if our government changes its stand then the medical community will start paying attention to this injury.
This is my opinion from my personnal experience and research into this injury.
Mindy

Mindy your right. Keep fighting thou. Who is the last doctor and what did He or She say? How many years are you now? Paul

Paul,
I saw all those medical personnel with the exception of on OT within six months of injury. So the last time my arm was examined was September 2000 by a doctor and April 2001 by an OT. My OT was the first person to ever measure how much movement I had left from my neck to my fingers. She is the one I owe so much too... The car accident was February 27, 2000. So right now I am twenty-seven months plus a few days into this injury.
I found my OT through research of my own. She is only one of a handful of OTs in Minnesota that has specialized and works completely with shoulder/arm injuries.(Even with all her training I am still the firt tbpi she has ever seen.) I have hope my arm will get better and can see some positive signs on good days... But for me I was almost twenty-three months into this injury before my arm showed even one positive sign. So my advise to anybody is give your nerves time... I think it is unfair of doctors to put a two year limit on your arm... In my opinion doctors should not give up until we are ready to give up. I think they are too quick to pass judgement.
Mindy

Cathy how did your surgery go? Paul

Hi Mindy Jennyb posted a web sit some time back that I fond very good. It was a doctor's in India Dr. Shrenik Shah & Dr. Anil Bhata I looked back but could not find it. Maybe if Jenny sees this she can repost it. I will go back and look again. Keep working at it. Paul

Allan Bezberg is doctor that should come off our web site. He's not a good doctor. He thinks we all should have one opparation to have our arm back. Paul

Hi everyone
Frank from NY here and yes I am a LURKER. I am 38 years old with R-OBPI.
What is a EMG test.

I see if I want to tell my fellow BPI members here about doctor that are bad. with some details of how bad they are my owen personal experience. They are quickly taken off. May be we should start a topic on bad doctor. Paul