United Brachial Plexus Network, Inc.

Thank you for this tip...I will read about it!!!!

Hi Michelle and all,
I have breast cancer and had a bilateral mastectomy with immediate reconstruction June 30th without lymph node disection. The surgery took around eleven hours. When I woke up, I had excrusiating pain in my right hand and fingers...all except the pinky. When I extended my arm or reached out for soething it feels like I put my arm in a electtical socket. Three months later I still feel pain in my fingers ( like someone hit each finger with a hammer) My fingertips are hyper-sensitive to touch, I can't type or hold a utensil in my right hand. I regained muscle tone in my arm but my fingers are not any better.
I was told it was a "stretch" injury and it would heal in six weeks. It didn't, and I am miserable. I realize my injury is mild, however any info would be helpful.
I've been hunting for anything related to this on the internet and read your post. How long did it take your fingers to stop hurting? My bicept is ok.

Hi Chemochick,
Sorry to hear about your injury. And sorry you have to deal with cancer and this. I'll keep you in my prayers. After my surgery, I had pain immediately in my shoulder and 2 weeks later numbness in my fingers and 2 weeks after that I couldn't use my bicep. I couldn't lift or hold anything with my right arm. That only lasted about 2-1/2 months and then I slowly started regaining strength back. I was in really bad pain for about a 8 months and then it started getting better and was pain free about 1-1/2 years after. May pain did move from my shoulder to my hand after a few months and then it was burning in the hand, sharp stabbing pains in my fingers (all except the pinky like you), etc. Pain pills didn't take the pain completely away, but I didn't notice a huge difference if I didn't take them. Hopefully your injury will heal like mine did. Even though it may not be severe, it will probably take some time to heal. And it is stilll very painful and you'll probably suffer the same symptoms everyone else here does, but you have some hope of them going away. My doctor told me going in that it would be at least a year-2 years to get back to normal so I knew I had a long road ahead of me. I didn't like hearing that, but at least I didn't expect to wake up and feel better in a few weeks. I think if you can get some therapy that will help you a lot. I didn't start therapy until long after I should have and it did help me with my pain as well as regaining some strength. I hope that information helps a little. Please feel free to email me directly to chat about it if you want. I hope you find some answers... Michelle

Hi everyone! I'm brand new to this site, and I can't believe I've never looked into this more.

I had an extremely bad car accident in 1991 when I was 18 (I'm now 33), c5, c6 avulsion on the left side. I spent six months with a crappy doctors in FL who wanted to amputate, and then after saying no, wanted to fuse my elbow. Thank God I said no again. Unfortunately I spent the first 3 years in a sling.

I saw specialists in NYC from July of '92 to '99. Had two nerve grafts, the first took, I now have total use of bicep, and some delt/ pec action, but not much. The second was in 1996 to the radial nerve. it never took.

I was pain free until about 1997, and I took the "grin and bear it" route until around 2001, when it really started to affect my work and social life. I started taking Neurontin, which has been moderately effective - I'm up to 1800 mg per day and still I'd say it works 50% of the time. I can't recall the last time I could say I was truly "pain free."

Over the years, I developed the tendency to draw my shoulder up, and lean on the bad arm. The upward pressure somehow made me feel a little better. However, i think that has made the pain worse in the long run. Today is a particularly bad day!

The only thing I've found that really helps is massage. I get massages all of the time, and they are nice, but the relief is brief. But, one guy I used to go to in DC (who moved ) did something where he dug deep into the affected area, trying to releave the bound up connective tissue. It's pretty painful and you can actually feel little bubbles or knots releasing. After each session, my shoulder was lower and lower, approaching the normal position. And the pain was far far less intense and less frequent.

There are two problems. Getting massaged all ofthe time is expensive. I wish I could bill insurance or something. The second,the guy moved away so now I'm in pain again, back where I started.

So, that's my story. I hate the pain. It feels like someone driving a hot icepick through my hand. I'd LOVE to know if others experience the same kind of pain, in the same location, and if you have recommendations for eliminating or at least alleviating it temporarily.

Mack

Mack
Welcome the message boards you find so many here to support you and to share with.

The Massage therapy that was so deep sounds like Active Release Therapy. I am birth injured (obpi)and pain is also and issue for me... The last PT I used took courses and practiced on me. Yes, it is deep and he kept asking if he was hurting me... But the relief was great.

Other PT's use myofacial release and that also helps.
I hope you can find someone to help with the pain. Temporary relief is much better than no relief.

Kath (adult/robpi)

Glad you mentioned massage....it is helpful for my son as well. In fact, he thinks his over-all pain has decreased somewhat since he's had massages for about a month. We hope to get back on track with the insurance company and have a MD prescribe them as they are expensive. Michele

Hey -

I see Chris' post on Sept 5 referring to John Floyd, my son. He did have all five avulsed when he was 15, and was in tremendous pain for close to 1 1/2 years & on three large dosages of pain meds (altho he couldn't tolerate the codones). As movement from surgery began to come back, John was able to slowly come off his pain meds - primarily during the two summers so he didn't have to try & adjust during the school year. By the third summer he was completely off all pain meds, and I do think a big part of that was the movement he regained through surgery as well as general coping skills (i.e. not get overly tired or stressed). He atukk keeps some Neuronton on standby if things get bad. So he isn't completely pain free, but is basically meds free - and I never see signs of pain.

I know that not everybody gets pain relief, so I've learned to try & not build unrealistic expectations in others that surgery will necessarily lessen the pain.

John saw a pain specialist (i.e. not his regular doctor) to help treat it, and I strongly recommend that. People react differently to different meds & dosages and it helps to have someone with experience to guide the process.

Hope that helps.

Ellen

"atukk" is "still" when the hands are off by one key!!

No more bourbon tonight for me...

Ellen

Hi!!
Ok, here's my "thing". I was young when my injury occurred, I was 17. My pain has never gone away. It, too, is in my hand. Between my thumb and pointer finger. Hurts to have someone touch it!!! I have tried neurotin, massage therapy (go to a chiro and have them bill it and your insurance should pay for it), hypnosis, heat, and I have seen doctors in Chicago and at Mayo for this and its not that the doctors don't want to help its that there is no real solution. Even if you cut your arm off it will still be there. I have c5,6 and 7 avulsed from my spine and I am on 19+ years with my injury. I stay inside when its cold and I hate rainy days. YES...........I lean my head and flit my shoulder and squeeze to get the pain to away. It sucks but I am alive!!!
Kath in Chicago

Thank you all for your input. Sam will be seeing a pain specialist on Thursday. I'm hoping she will take the case on as I have a lot of respect for her. It is encouraging to hear that someone has gotten relief following nerve transfer surgery. I hope that will be the case for Sam.

It has been a long and difficult year. Right now, I'm concentrating on keeping a positive attitude and visualizing how I'd like our lives to be. I can clearly see how important it is to take care of ourselves and get enough sleep. As Sam has a brain injury in addition to the BPI with avulsed nerves, it can make it a real challenge. But, I am so grateful to have this challenge!

My appreciation to all of you...Michele