United Brachial Plexus Network, Inc.

Hi Everyone!

I was wondering if I could get some advice.

I just sustained a RTBPI on Dec 3rd. Had surgery on Dec 12 to repair the nerves.

I have terrible pain though. I was told that my shoulder blade pain is becuase my muscles have atrophied so much that it is not staying in place much. I am working on OT exercises but they just make me so sore. Additionally, my left arm is doing everything and now my muscles are getting tense and tired so easily becuase of it.

I am new to all of this and I am really tryin to be strong becuase I could be much worse off... but some days I just break down and cry. It is so painful and I do not know what to do.

I was on Vicodin 10/325 every 4 hours as needed, but I have been off of it for about 1 week as my Doctor said that I needed to be off of it soon so that my body did not become addicted to it. I'm not sure that the medicine helped much, but it was a bit better than what I feel off of it. I still was in terrible pain though.

I guess... does anyone have any suggestions? It has only been a little over a month and I am just not sure I can do this much longer. I am 21 and in college ... this occurred during another surgery (accidentally cut my nerves)... and I just don't know what to do. I am putting on a strong face for my family and friends, but the pain is starting to get to me.

If it's nerve pain you could try one of these meds:
Neurontin (gabapentin)
Lyrica (pregabalin)
any tricyclic antidepressant in LOW doses (Nortryptalin, Amytriptalin..)

As well:
TENS machine
Accupuncture (some swear it works for them, something you'd have to try for yourself).

Marieke 33, LOBPI (and a spinal cord injury TM with tons of nerve pain)

Your docs will always try to ween you off the harder pain meds after surgeries. To be honest, it sucked, bad, when I ran out of meds even though the pain was still there. All I can say is do your best to tough it out and evntually the pain gets lesser, either that or you get used to it and it doesnt bother you as bad. Maybe a month or two or so after you'll be "able to cope" a bit better.
The doc may still prescribe you neurotin or a similar nerve pain medicine. It might help, if you have a burning or lightning type of pain in the nerves. I personally didn't take it. But if you need it, just call his office and ask. Its not anything near what Vicodin, Percocet, Loritab, Oxy or any of that stuff is.
Continue to do the OT as much as possible, although it hurts some. Thats the best thing you can do to regain the most potential use an even eventually reduce the pain a bit.
I know exactly what you're going through. I had a LTBPI in Sept. 07. The pain sucks, but we cant do anything about it for the most part. Just takes time. Good luck and if I can help any further, I'd be happy to.

Maybe try a sling or a shoulder brace to help with the shoulder blade pain; I think it would take a lot of the stress off of it.

For nerve pain, I use Neurontin. It's the only thing that helps me.

I hope your pain gets better!!

Hi guys!

Thanks for the advice. I really do appreciate it. I am going to try to call my doctor up sometime this week to see if he recommends me getting on nerve pain medicine or what not.

I guess it is all just part of my adjustment. I just hope that I can adjust to it all soon. I mean, it has been a month and while I am adjusted to doing most things left handed now, I just still have a hard time dealing with it all - especially since I just get tired so easily and have the pain.

You all have done an amazing job of helping me though! Thanks!

I always hate this phrase but "It just takes time" and for all intents and purposes thats true. I'm no doctor but everything you describe is obviously familiar to me, and completely normal at your stage. Or I guess what we consider normal.

Everything is harder but not impossible. Just stay tough and continue to try as hard as possible to recover as best as can be. It hurt me a lot and often along the way and still does whether it be at the gym, the pool, washing clothes, walking, etc. But I'm closer to normal than ever and stronger willed because of it.

Hello, I know exactly what you are going through, I only found this site today and I've felt very alone with my injury and pain. I've had my injury since surgery in June 2007 in both arms, they told me it would take up to 18 months to heal, that was over 18 months ago and now they are saying another 18 months. Like you the pain was unbearable for a long time, I was put on several medications that did little to help or had some minor short term relief. Finally I was put on Gabapentin 300mg, the dosage was slowly built up to 12 tablets per day. I still have pain that varies through out the day, on a pain scale of 1 to 10 my pain varies from about 2 to 7. I guess most people would consider a pain factor of 7 to be painful and it probably is but I've lived with it now for so long that it is part of my every day life. If the pain is gauged between a factor 1 to 10 then the pain prior to Gabapentin is off the chart as it was absolute torture and i would have given it a pain rating of more like 20 than 10. So I guess I'm saying that for me Gabapentin has been the only medication apart from morphine to give me pain relief, I hope I have been of some help, hang in there mate

Hi everyone!

Thanks again for all the advice. I am going to look into the medications that you all have said and talk to my doc about them - see if he thinks they will help.

Looks like pain is just a part of my life now. I had Neurogenic Thoracic Outlet Syndrome before, which I thought was horrible enough, but this is just so much worse.

I guess after years I will begin to live with it... I wish there was more research on all of it. I can't seem to find much on the net regarding traumatic brachial plexus injuries other than this site and the UK one.

Life will go on though... I just need to learn to live with it somehow. Thanks for the advice. Everyone on here is awesome and it does help to get through it all

Hi,
did you speak with your doctor regarding the medicines? Have you started using them? If yes then are they giving you any reief from pain? Please do let me know as this pain is killing my life.

I had my injury 3 years ago. I was on percacet for the pain in my shoulder and became addicted. That stuff gave me a good feeling but had no effect on the nerve pain which is our real problem. I decided to quit the drug and breaking my addiction was one of the hardest things I have ever done so be careful when your doctor says you need a break. I was also on gabopentin for the nerve pain but I could not really tell if it was having much of an effect so I quit taking that too. When the pain comes nothing seems to help. I am finding that with time either the pain is diminishing or I am more accustomed to it and it no longer rules over me. I find the best medicine of all is to get really physically involved with something. Maybe it is the distraction or maybe it is the rush of endorphins but whatever it is I find that at these times I can almost forget that there is any pain. Hang in there and I hope things will improve for you as they have for me.