United Brachial Plexus Network, Inc.

Hey James,. sorry tot hear you have the FUN Injury! I Have had it 6 years... the pain get more bearable... but I dont think that it EVER goes away... you just kind of get more used to it so it doesnt seem to bother you as much! I liked Lyrica, however I was noticing weight gain so I have stopped taking it! It took the edge off for me too!

Keep asking questions, there are so many people on here with years of experience!!!

Keep your head up, or down if it helps!

Courtney in MI

Have you been to a BPI specialist? I know many may live with a lot of pain but there may be something they can do for your injury. Your injury is only a few months old and nerve surgery should be performed by 6 mos post accident if possible. Many on these boards have had great results with nerve and/or muscle transfers. Just hate to see you amputate before you have checked all the possibilities. I think some have even lessened the pain with surgery. I know many are taking pain meds, can't help you there as my son seems to be in the minority with no pain. Best of luck.
Sue

Hi James,

I have a couple suggestions:
- If you haven't, go see a pain specialist. BP pain seems to be "managed" by different meds for different people - in other words, there's a good bit of trial & error to figure out the right combination of meds & dosages that might work best for you. Experienced pain specialists might be able to more quickly find that formula for you.

- See if you can get a back issue of the ubpn site's magazine called "Outreach":
http://ubpn.org/ubpnweb.nsf/web/subscribe.html
A recent publication of it had a whole section on dealing with nerve pain. I remember the article by Chris Janney was especially interested. He has met pain pretty much head on and found effective ways to master it (or at the very least, manage it)

- General coping measures include staying distracted & busy, getting exercise - and to some extent, time seems to help. Some people do find relief through returned motion via surgery. My son lost all five nerves and had surgery that restored some degree of movement & function via transferred nerves, muscles & tendons at Mayo. So although his arm is told to move now via different "signals", his brain sees that when it says move the arm does - and John has been able to stop taking all pain meds execept for the occassional neurontin. Not everybody gets relief via this but it can happen.

Take care,

Ellen

Hello,
My injury is similar to your James. It past 8 years and the pain is less. I think the more you talk about, and understand it, you get less pain. Keep your mind active in good projects, things you like. Find healty motivation. I remember in early times passing days twisting arround in pain, later it turn on some hard moments of pain, thinking the only way to stop that is kiling my self. Now, i can manage a lot better, i even dont notice the pain. But i feel that she is allways there. With the medicine i never get good results and soon i give up on meds. Cirugical is a very risky methode, dont go that way cause doctors still need improve pratice. Amputation dont do nothing, and can be bad if you are not secure about.
So James tell me how is your pain? It comes hard some times? or is allways same level?

Paulo

Yes, i remember my firsts posts being under constant pain as i typing, burning hand fell, and high 3 secunds electro chocks with breaks of 5 sec.! not now thank god!! Usualy the docs refer phantom pain in amputed members. To our pain i dont find a specific designation from docs. I call it a kind of phantom pain. Is our brain that wants to give instrunctions to our arm zone, and as the nerves are damaged it happens uncontrol pain. Thats what i think! So is possible as time pass our brain has some kind of adaptation. I hope!
Paulo

My daughter had a similar accident on November 18th of last year. She had a flaccid arm with excruciating pain through most of the day. She had her primary surgery 3 months ago in St Louis. For 1 month after that she was on her usual meds of Lyrica 2x/day, Tylenol and oxycodone when it was very intense. The meds gave her side effects of weight gain, always tired and others. She decided one day she wanted off the meds. We cut her dose in half over the next week, and after that she went off all meds completely. Her doc said that there is a chance that the nerve that was causing the most grief may be one that we are trying to re-innervate and it helped with the pain. In the last 2 months she has not had a single pill to help with the pain. Instead she uses mental exercises to work through the pains. She still has a flaccid arm but is able to make it through the day with out all the pain that she had before. I hope the pain subsides for you,

Roger

In answer to the type of pain, as in what it is called: Yes, it can be refered to as phantom limb pain EVEN if you HAVE your limb. And it is neuropathic or neurogenic pain. The burning/tingling/shock.... it is from the nerves getting signals and NOT being able to figure out what it is feeling, as in , hot/cold/soft touch.... so it sends out the pain sensation. The nerves are "mixed-up" or confused as they are getting messages that they either can't decifer or cannot respond to appropriatly.
Meds that work best on this type of pain are Gabapentin (Neurontin), Pregabalin (Lyrica) and Tryciclic antidepressants at low doses (well lower than you would use it for actual depression).

Good luck,
Marieke (31, LOBPI)

Hi James,

I too was in a motorcycle accident but luckily I didn't have nerves removed from the spine... my nerve damage is from about my adam's apple to my arm pit. My left arm hangs limp when not in my sling or brace and sometimes I have so much pain I curl into a ball and scream. I'm on Neurontin, oxycodone and Kadian (extended release morphine.) I am not yet courageous enough to stop taking drugs. Be careful.. the pain will change you. It caused the ruin of my two year relationship and has screwed my life up something good. Watch who you take your anger out on and pay attention to what you say.


I have found that the more i can immobilize my arm the less pain I will feel. A warning: I had used ACE bandages to strap my arm to my chest and the pain almost dissappeared but this also caused pressure sores which, had they become infected, could have killed me. When you're on heavy narcotic pain-killers your immune system essentially shuts off. There's a company called Hanger who makes a great "subluxation brace" and I've recently purchased a Breg SlingShot 2 (go here and click slingshot 2: http://www.breg.com/products/bracing/so ... fault.html .) Before I had the brace from hanger my fiancee... ex-fiancee... made me a sling with a swath which secures the sling to your waisr.. I found that if you take that swath and run it infront of your shoulder, behind your neck and connect it to the opening of the sling it prevents your shoulder from drooping.

I hope some of this is helpful...

chris

I'm Kathy and my pain is definately easier to take with time. Mine has been 7 1/2 years. I've been on 3600 mg of Neurotin - felt a little crazy though. Then tried Topomax for a couple of years. Decided to come off meds this spring and see what happens. So far doing good.
At first, after the injury, the pain was like electric shocks (bad ones). Then it added burning and don't forget the numbness. I noticed around 5 years that the shocks are fewer and less intense. My issue is the numbness drives me crazy. I do know that concentrating on reading, projects, movies, sleeping seems to either divert my attention away from the pain or it really works, because I have less when I don't dwell on it. Good luck.
Kathy

james,

this thread may be dead but i wanted to use it if you didn't mind. I am one year post motorcycle accident that tore 2 nerves out of my spine as well. the nerves to my back muscles and bicep and deltoid. thankfully my hand and forearm work ok. the pain is horrendous and i am pretty tired. but i had two surgeries and i do feel much better (respectively). I hope your emg went well and that they were able to help with pain and movement.

Also i wanted to ask anyone on this thread. does everyone work, especially those of you on no medication. I am not hurt as bad as most of you, but i find it really hard somedays. I am on lyrica, gabapentine, and oxy. it all helps in different levels and i am trying to tweak it to the best levels. my pain has started increasing as i have started working. but i am rambling now. so i will go.

GOOD LUCK james. i wish you the best.