United Brachial Plexus Network, Inc.

Had motorcycle accident 9/2/09. Surgery at Univ. of WA show C5, C6, C7 totally avulsed. Told no hope for any further surgery. Still experiencing major pain in shoulder, hand and forearm. Burning pain as I've read described by many here.
Totally flail arm, no sense below elbow except a little movement of fingers. Wondering about the chance the pain will lessen over time. Almost unbearable now. On Neurontin and Percocet and long acting morphine. Just started an anti-depressant called Eavil which is supposed to help with the pain as well. Can't tell that it''s making any difference. How do you go on? Can't imagine the rest of my life with this pain. Can handle the idea of no function in my arm but the pain is too much. Please respond with your experiences. Thanks! Need all the help I can get.

http://ubpn.org/forum/viewtopic.php?f=1 ... 5&p=157068
http://ubpn.org/forum/viewtopic.php?f=1 ... 3&p=135287
http://ubpn.org/forum/viewtopic.php?f=1 ... 8&p=104949

Sorry to hear about your injury. I've got the same one (C5, 6, & 7 avulsed) and battled through all sorts of drugs over 5 years. I hate to say it, but for me, the drugs did a lot more bad than good. They burnt my spirit out at the core. I lost most of my normal very enthusiastic will to fight, and of course the pain on top of it all didn't help at all. I tried pretty much every drug out there. The pain became much more manageable after I got off all the drugs, which coincided with the clinical trials I participated in at Stanford Univ. with Dr. Christopher deCharms. I have heard that the pain levels out for quiet a few people between 2-5 years, so my experience could have been influenced by that as well. In the end, the meditative techniques I learned at Omneuron (at Stanford) I still use today and was the most empowering gift that has been given to me in regards to pain.

I hope some of this helps and I wish you the very best and that you do get some relief from the hell this injury can bring down on someone.

Christopher

you can read my story on the Fall 2006 UBPN Outreach magazine page 18:
http://ubpn.org/index.php?option=com_co ... &Itemid=90

Hi Christopher-- How can people involved with the Omneuron stuff? Maybe I haven't read enough, but is this a technique that a patient can now get? If it doesn't involve new drugs I'm all for it.


Hey GoofTwo-- I'm almost 1 year to the day on a BP avulsion as a result of getting hit by a truck as a pedestrian. Somehow my only lasting injury was a BPI, thankfully. I still control the pain with gabapentin and elavil, which work pretty well in combination for me. Also I use tramadol/ultram for breakthrough pain, when I can't get the pain to stop. One thing I've been trying recently is mirror therapy, which has helped me reduce some of the medication dosages, although not by a whole lot.

I've read that some people do find a general pain reduction 2+ years after the fact... I hope that's the case for me as well.

Hi MW,

Here's a link to their site that was included in the above posts.

http://snapl.stanford.edu/research/rtfmri.html
http://www.omneuron.com/technology.html

I just called up and asked if they needed more patients and then drove up and stayed with family in San Francisco while training for over a week in the clinical trial.

Good Luck,
Chris

Hi
I have pretty much exactly the same issue except my motorbike accident was 02/01/2001. Im sorry to say my pain hasnt lessened at all. i have tried many many drugs incl. neurontin, lyrica, duloxitine and many more not to mention the oxycontin / endone etc.
A couple of years ago i went to the Barbara Walker Centre for Pain Management at St Vincent's Hospital in Melbourne Australia. This was a course of intense cognitive therapy and physio'. From this i learned not to rely on drugs so much and to use exercise and some simple strategies they taught me. My med intake since then was pretty much zero until i started back at work full time in a concentration intense job. The meds are to this day are greatly reduced however the pain is still very much there and remains a controlling factor to my life.
My next step is a pain stimulator which is to be inserted into my spine, possibly within the next few months.

all i can say is drink loads of water (this helps heaps) and stay active... oh yeah and laugh a lot.

Like others my daughter was on multiple medications over 2 years. The meds made her feel iritable, bloated, depressed... Just not able to function well on any given day. She decided to get off the meds. We reduced the meds over a 3 month span till she was off them all together. Now she feels much better. She has episodes everyday but has learned to block them out in her head. At times they are still severe, but she said she would rather deal with the pain then the side effects of the meds. Good luck with the pain management.

Say gooftwo? hope today is better'n yesterday but not near as much as how great tomorrow's gonna be.
i've been dancing around here for awhile now and i'm comfortable in sharing 'the dope...' on this sucker.
ain't no lie this beast has big teeth and sure as shoot ain't shy on usin' em. there are two camps here.
one; accept it. alllll of it, and go on out there and fight the good fight, and mind over matter and the like.
another of us, accept it. alllll of it, and go on out there and get our prescriptions filled. (everything in moderation)
it's gonna be a rough road, for awhile anyway. there will come a day when you'll be at a place where you are
comfortable in your own skin. that day you'll get yourself up and ready just like every other day only you'll
ask yourself is this where i belong? can i do anythng any different? who can i help today? help yourself first.
if you've been down the same roads as many of us here have you'll discover that you don't actually need all
the meds. you can actually taper off or maybe as some have stop taking the meds. all the power to you.
you'll see that those who have chosen that path have replaced the meds with other stimulants. bike riding
running etc. i don't know if they did all that before their injuries or if they are just summoning their strengths
from a deeper calmer self. who know's? they do it. then there are the rest of us. we find our selves and accept
what we have and go on out there and get our prescriptions filled. (everything in moderation).
there are a lot of charctures here on these boards but there is only one you. ask and it will be answered, knock
and it will be opened. none of us would be here if we didn't have a story and none of us would have a story
if we didn't suffer the same wrecthed commonality. don't let anyone kid you, this sucks. so, i doubt if i shed
any light for you but just remember these, we are all here for a reason, Carolyn is the Grandmother of hugs,
Christopher will break it down into a lecture for you, Dan will put it in a wicked cool brace, Daniel will tell you how it is, Amy and Marieke will give you comfort and smooth it out and me? I'll just ramble till my time is up.
take care, feed the fish and don't forget http://freerice.com . one more thing,
welcome to the club nobody wants to be a member of...
peace out,
scott
lest i forget why i'm writting this, check out this link to a previous discussion on pain meds.
http://ubpn.org/forum/viewtopic.php?f=1 ... am#p173894
i might add i too have been working on suspending my meds intake. i'm a single guy living with my single 19 year old son
and i have enough distractions. i'm trying to get to the point where i only take something for the breakout pain. it's damn difficult to know the difference.
is there a spell checker around here???

well a good start was finding us. a good support group always helps. i'm on the same meds as you and i'm goin on three yrs in. i play pc and wii games to take my mind off it. that and med marijuana self meding until it gets legal here but it works lol. i'm on msn messenger if ya ever just wanna shoot the s**t addy is danielscheper@hotmail.com . i play an online combat flight simulator (bout the only game i found that you can play one armed . i need a wingman if your into it. talking om here helps and a few of us are trying to get ppl to stop by the chat i think once ppl use it they will love it.let us know how you get along.
daniel

Hello, Gooftwo, YES, WELCOME to this club nobody asked to join. I am glad that you found this Supportive,Caring, Family.
And yes, I give HUGS because HUGS HEAL!!!! So does venting. Please sign up for your TBPI Private Forum Board. I am sure it is very cathartic there as well as iyr Adults with OBPI'S are to us.
Also, there is no such thing as a dumb question on any Forum message board and everyone is welcome on all of the "open" ones.
Here's a((((((((HUG))))))) for you.......HUGS HEAL! Come to Camp 2010 in October & I'll give you a real one!
"Gramma" Carolyn J/71 and proud of it!

Well there is good news and bad news

My accident was in 1982 . Totally paralysed right arm no movement at all . I had severve pain like described burning sensation etc. If scale was 1-10 with 10 been worst. Back in 1982 after accident it was a BIG 10.
However then I was on 200mg of Tegretol(UK) at least 6 times a day every day for 14 years BUT...........................................
I will try and keep the story brief:

I had a really strong DEJA VU experience when I was a kid 15years old (PRE ACCIDENT I injured arm when 17 years old)

Every year for 15 years when the Formula 1 GP was at Monza I told my wife of DEJA VU experience then out of the blue ........

She booked me in for a regression session hopefully to find out about Monza, Italy etc

Had the session .
REALLY INTERESTING and injured my right arm in each life .
Talk about bad luck .
However came home then when I went to get my pain killers (bare in mind the frequency with which I took them)

I noticed I was getting low in tablets..........

THIS NEXT BIT WILL SOUND SURREAL BUT IS ABSOLUTELY TRUE
I rang the surgery( pharmacy) to re order the tablets but they said I had not had any for a year......................
Now I argued with them for 20 minutes HOWEVER WHEN MY WIFE CAME HOME she confirmed it.. AFTER THE REGRESSION SOMEHOW I had learned to handle the pain by understanding how the previous experiences related to the pain.
NOW do I believe in regression ( NOT REALLY) BUT A 2 HOUR REGRESSION STOPPED massive pain and showed me how to cope.
I HOPE THIS TRUE STORY WILL HELP


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