United Brachial Plexus Network, Inc.

Hi, my name is Andi and I'm 37 y/o. I have posted here once before (last year) and I've read the message boards several times since I've found this site. Everyone seems so helpful to one another and I'm hoping I can find someone to answer some questions cause I'm in need of ALL the help and advice I can get at this point! This will be pretty long so sorry!

Here's a little info about my injury. I had a hernia repair w/tummy tuck on 2/13/03. When I was coming to after 10 hours of surgery (It took 6 hrs. longer than I was told) I had severe pain in my left hand & arm. I was told that sometimes that happens due to positioning during surgery and it will go away quickly. It didn't, but I was sent home the 17th in pain - and it was getting worse. By the 25th I couldn't stand it any longer (barely slept, couldn't eat) and went to the ER and was admitted and given a Dr. to "treat" my arm. The Dx was "probable traction brachial neuritis" and full recovery is expected (NOT!) I was seen by this Dr. 3/7 and had a EMG which "revealed evidence of a Brachial Plexus lesion w/ severe involvement of the medial cord, and partial involvement of the lateral cord." This was never really explained to me, Dr just kept pushing back the recovery time (went from 2-6 weeks to Never in less than a year!). I kept going to him but my appointments were spaced 2 mo.- 3 months apart, Is that normal? He said he didn't need to see me because nerves grow back slowly. I called his office up to 6 different times in-between appointments, complaining mostly about the coldness & sweating (pain,numbness) in my hand, finally he saw me and said he didn't see any evidence of that at the appt. That was in June. After that appointment he mainly addressed my "increasing depression from my inability to heal" and started shoving Zoloft in me until it was time in Oct. to do some physical therapy.

I went from expecting a full recovery to less than 1 year later being told there was no reason to continue seeing him cause I wasn't going to get any better-Oh, and here is the phone # to Vocational Rehab. Since I'm right handed and my injury was on the left, he told me to go get a job that I didn't need my left hand for! Very sweet esp. since I was a computer programmer.

I want to know from others w/ this injury what was the "standard care" they recieved from their Dr. How did you find out about surgery or other methods of treating TBPI. I was basically put in a sling for 7-8 months then did a little physical therapy (that did help build-up the strength in my hand), but not my shoulder, which is now falling off my body - slowly.

Where do I find clear answers to questions like - What exactly is a lesion? Also, can you do anything for a lesion (surgery, etc...)? And what are the medial and lateral cords? I'm going around in circles looking this stuff up myself.

Was anyone else here as clueless as long as I was about this injury? I normally ask my Drs a million questions to make sure I understand what is wrong and what needs to be done to fix me, but I didn't do that this time (Turned out that during the same surgery I ended up w/ the TBPI I also became SEVERELY anemic & iron deficient from blood loss-so I had this other then unknown illness at the same time!)

So, please If there is anyone here that can answer my questions or lead me to answers, I'd really appreciate! I'm really interested about who was or wasn't a candidate for surgery, and why, Also what type of Dr. Dx'd and treated your TBPI, And what other diseases/dystrophies/syndromes can come from TBPI(RSD,etc...) My e-mail address is waynesworld@woh.rr.com for anyone who wants to respond to that instead, or wants to chat about anything! Thanks a bunch!

Andi welcome to the club no one wants to join.

There are a few others on here that have received this injury in the same way you did. Basically having the arm in an outstretched postion for prolonged periods can cause damage to the BP. Usually it is a stretch and it may recover in time. Unfortunately not always as each injury and recovery is different. It sounds as though the dr you were seeing wasn't completely knowledgable in BP injuries. The reason he wasn't seeing you more than every 2-3 months is probably because nerves heal at about 1 inch per month. This would probably be standard. But he should have had you doing OT or PT during this time as stretching the muscles and excercising is important so you don't lose ROM and strength where you still have it. It is also important to try to strengthen the affected areas.

Lesion is kind of a fancy word for damage. Here are a couple of sites I found that may help you understand that and the cords
http://www.upstate.edu/cdb/grossanat/limbs2.shtml
http://en.wikipedia.org/wiki/Brachial_plexus

Dustin was seeing a physiatrist as his injuries were do to a TMVA. The physiatrist was the first to mention TBPI and had him see a neurosurgeon. The neurosurgeon explained to us the BP injury and where it was but did say he did not do surgery with the type injury Dustin had. His arm was flacid but he did have hand movement. I got on the computer and found this site. I read and asked questions. I saw that people were having great success with the Drs at Mayo so I took him there in March which was 4 mos post accident. The physiatrist and neurosurgeon sent referrals for us.

Depending on the injury sugery may be possibility. You should see a dr that specializes in adult TBPI. If you click on resources above you can find a list of dr's.

Your shoulder falling off you body is called sublexation. Dustin had this in the beginnig too. His shoulder was about 2 fingers down from position but with OT and exercise we did get it back into position. This will depend on what muscles are affected.

I would strongly suggest you get to a BPI specialist. They would have many answeres and a plan of treatment.

Sue