United Brachial Plexus Network, Inc.

Hi everyone--

I'm new to the forum and I'm glad I finally found this space. I knew the UBPN existed but for a while but I was in denial about the severity of my injury so I put the blinders on and just did what the doctors said. I'm looking forward to sharing info with others about coping with their condition.

First, my brief history--
I was out running this year when I was hit by a vehicle and sustained, among other things, a traumatic BP injury. My humerus was shattered and my biceps and triceps muscles completely destroyed. My left arm, hand, and wrist are completely flail but I do have upper back and shoulder strength. After the initial recovery, I had an appt at Mayo in Rochester MN, where Drs Spinner, Shin, and Bishop suggested a free muscle transfer from gracilus to biceps. The muscle graft would then be innervated w/ the shoulder nerve (can't remember which one). I am now recovering from that surgery in a cast/sling combo (google Donjoy Ultrasling ER to see what I have). Hopefully in 6 months I may be able to raise my lower arm under my own power, and not need a sling all the time.

A couple things I have done to help maintain a normal life w/ only 1 functional arm:
-Elastic shoelaces
-Kitchen Workstation from Sammons Preston-- allows you to cut, chop, peel, open jars etc with only 1 hand. Well worth the cost


I deal w/ pretty severe neuropathic pain in the hand though; currently on gabapentin (neurontin), amitriptyline, and tramadol, with limited success. Tried a TENS but did not help.

For those with TPBI, does the pain ever decrease over the long term?

Any suggestions for dealing with the pain in general?

Thanks everyone,
Mike

Hi Mike and welcome to UBPN, the Isle of Misfit Toys. ) Sorry to hear of your accident, but it aounds like you've already got an idea on what's involved from the surgery-side of this 'dang' injury and have seen some of the best BPI doctors.

As far as the pain goes, do a search of the forum to see how others have been dealing with this issue. I've been fortunate in that I have very little pain due to my injury, but that may be because I did not suffer full avulsion of the nerves at the root, rather, stretched the nerves beyond repair.

Thanks for the link to the Donjoy sling.

Frank

Hi!

Welcome to the forum! Sorry to hear about the injury though. You definitely seemed pretty well informed about it all.

I just had my injury in Dec 2008, so I am not sure I can tell you much about long term issues.

I personally do have lots of nerve pain as well as muscle spasms from my injury. I took neurontin but it did not do much for me at all. I go back to my doctor on the 26th to have follow ups concerning the progress I have and discuss more pain management options. It seems like from what I have researched and heard from others, that the pain really varies from person to person. Some have lots and others have little.