United Brachial Plexus Network, Inc.

Hi There

My name is Karen and I am writing this on behalf of my brother who is still in hospital. Jamie is a very recent victim of TBPI. We are frustrated at the slow rate with which the medical team in our regional hospital are diagnosing and treating his injury. He has been in hospital for the last 3 weeks and it is only recently that attention is being directed at his arm as the full impact of the injury becomes apparent. Due to his other injuries and heavy medication utilised to help him through his critical period, they have restricted his intake of medication. What my sister-in-law and I want to know is firstly....are there any suggestions regarding what medication should be approached and secondly.....how do we invigorate an action response from the medical team. My brother has had two nights sleep in 3 weeks. As you have probably experienced in this time, sleep is the last thing you can do with everything going on in your mind. My brother has been one of the more extreme cases with respect to his exaggerated repsonse to medication etc. Any insight or advice would be very much appreciated as we begin to understand and support him through this life changing event. With thanks in advance. Karen and Jamie (on his behalf)and Gina

Hey--I'm from a small town & it was about a year before I was diagnosed. I had a broken R. arm and that seemed to be all any one cared about--I told DR. after DR. that I couldn't feel anything or move my arm. After the cast came off they just shrugged or said "nothing I can do"--one ortho told me to "find Jesus" and walked out of the room.I kept hearing about nerve injury and avulsion--but it was 10 or 12 months before I finally got a real diagnosis and a definitive explanation of what was going on.
After that I've spent 10 years trying to get "treament"--I had my arm taken off after a couple of years cuz I was sick of carrying it around.After that I was told that I had "phantom pain from the amp. and it was all in my mind". I spent 2-3 years trying to drink the pain away--and about '97 found medications that help. Last year I discovered methadone.It's the best medication (for me) that has the least side effects. And I have tried them ALL.Seizure meds-pain meds-narcotic- non-narcotic-steroids-even mixilitine or mixitil which is for irregular heart beat but seems to work for a few peoples pain. They've had me on meds that almost killed me--(they love to 'experiment')--or had me so mentally messed up that I tried to kill myself.I've found that methadone and restoril work great in my case.Restoril is a mild relative of valium that is used mostly for sleep.It also has the bonus of 'quieting' nerve impulses and relieving the intense spasming feeling I have from the torn nerves.As far as specific treatment goes--when you find it let me know--I've been searching since Dec. of '93-my motorcycle wreck was Dec. 12 '93- and the only thing I've found was amputation, a scapulexy (shoulder blade bolted to rib cage to keep it in place) and methadone.I've been sent to the wrong Dr.s for the wrong reasons for years--all they can see is my amputation, and that was an ELECTIVE surgery. Most of them don't much care why it was amputated-and they sure don't like to admit they don't know what to do--after all, they're DOCTORS and I should be grateful they'll spend 2 minutes examining, diagnosing, and treating me.Usually for the wrong thing.
It's a hard thing-this injury is rare and medical treatment is hard to find--don't give up. If your brother has the kind of pain I have then find a docter that will help you deal with that.There are surgical options that help.But I don't think there's a 'solution'.At least not yet.But I firmly believe there will be one day.
Well, good luck and if you find treatment--real treatment--let me know.-----Ronin

Karen, no matter what the Doctors want to wait at least 2 to 3 months to do an EMG or MRI on your brother to see what nerves are working and also to see what muscles come back. Also if he needs surgery, it has to be done between 3 and 6 onths no later because the muscles atrophy. I am not a Doctor but these are my two cents.