United Brachial Plexus Network, Inc.

Hi I'm a lurker and have just registered here. I am so frustrated this morning that I needed to beg you guys to read my story and tell me if you have had similar experiences and symproms or if my doctors are just wasting more of my time.

I had a lymph node biopsy to determine if I had Lymphoma in Jan. 2002. The nodes were removed from near my clavicle. I have a 3-4 inch scar that runs across my shoulder, right at the curve of my neck. Think of it being close to where a bra strap would be, but closer to my neck. I am a 48 yr old women and I have had 3 children and my share of other surgeries, but as soon as I woke in the recovery room after this one---I was in severe pain. Four days later, I developed a seroma because the doctor did not place any drains in the wound and I had to go back in and have a drain placed. They did not find cancer, by the way, but I have remained swollen from below the ear, along the neck and into the chest wall and then all of the shoulder and upper arm , including the shoulder blade. Most of this area is also numb. And it hurts all the time, but at night it's awful. They think I also have lymphedema.
After an MRI, the doctors are now saying it is a BPI. The spinal accessory nerve was streched during surgery and they don't know how long it will take for those nerve fibers to grow back. They recommended a nerve pain block, with cortisone and I had that done about a month ago. It seemed to help for 2-3 weeks, now I'm more swollen and have more pain than ever. I see the pain management guy tomorrow.

1) Anyway, how can you be numb, but it still hurts if someone even touches your skin?
2) Does anyone have problems with swelling or is that the lymphedema? (damage to my lymph glands that causes lymph fluid to pool under the skin)
3) I was told my arm is atrophied--about 25%. Is physical therapy helping anyone?
4) How many of you guys are in pain management or take Lortab (or something else) daily?
5) How would you describe the pain you have and where it's at?

Dan at nerve-injury.org has been a great help. I appreciate any advice you guys can give me. I WANT MY LIFE BACK! (sorry for shouting!)
Tessie

Hi Tessie, sorry you've got this problem but it's great you haven't got cancer :0) If it is a bpi (and there are many caused by surgery, it's called iatropathic injury) then a nerve block seems like a very strange way to treat it.....have you had any kind of EMG to aid the diagnosis? It's very important to see a bpi specialist as soon as possible, even if it is a possibly recoverable stretch injury this needs to be monitored and you should be doing PT to prevent contractures and atrophy of the muscles or you'll have reduced function when the limb does reinnervate. I think it's time to start making some noise here Tessie....there's a list of specialists on this site (click on Bridget's article above, there is a list of them contained in there) try and get some action, insist on PT as well to keep things moving, bpi or not paralysed muscles very soon start to shrink and cause problems. In the very long post below 'Roll call, lurkers too' there are several people with iatropathic bpi's who may be able to advise you, click on their names to email them. Let us know how you get on and come back and ask us more if you aren't happy with the answers. Good luck :0)