United Brachial Plexus Network, Inc.

Hello All! Reading so many TBPI stories I realize I'm in the right place for information. I was caught in a avalanche in April'08 which dragged me over a couple of cliffs leaving me with a sever BPI to my right arm. My arm was completely un-responsive but I did have some shoulder movement and feeling. Like many, I ended up at the Mayo Clinic in Rochester, Minn. for surgery. Unfortunately, the impact on my body was pretty bad. I had c-4,c-5,c-6,c-7,c-8, and t-1 avulsions. My only hope was a muscle transfer to gain any mobility in my arm. I had this surgery done on Sep.12,08 and recovery has taken some time.

I have several questions that some of you might be able to shed some light on! I'm wondering will this neuropathic pain ever go away? I realize we all struggle with it and hope the body can adjust over time. I take about 2500mg of neurotin a day to control it, too many side effects with other Meds. For those of you who have had this gracilis muscle transfer, how's it going? I'm told I need another surgery next year to gain more movement in my shoulder. I'm curious what to expect with bending in my arm. Any imput would be great. Finally, the hand! I'm told I'll never be able to use it again. This hurts the most. Any thoughts in regards to the future of TBPI and the chance science and technology might help us regain mobility?

This injury has been devastating. I'm glad I found this site. I feel everyone's pain and understand the mental and physical struggle we all deal with. Thanks for your time and stay STRONG!

Hi Michael,

So sorry you've had to join this "club". The return of motion will take month of therapy, I'm sure you know by now - and the more disciplined you are with sticking with it, the better your ultimate results will be. It also would help if you had a way to exercise in water, since that would remove the effect of gravity working against you.

John, my son, also had full avulsion of all five bp nerves, and he can bend his arm & hold ~5 lbs of weight against it, as well as grip things against his side. He also had severe pain and was on max daily dosages of neurontin, eleval and topomax. After a couple years, he was able to wean himself off all pain meds, and says he only notices the pain about once a month. He's learned some skills (i.e. stay distracted, get enough rest) but also with the return of motion from surgery, his brain did turn off most of the pain "signals". This doesn't happen for everybody to the extent it has for John, but most people do find that over time the pain gets better.

Do you live out west? Or were you just on a trip when the avalanche hit? John has relocated to Steamboat Springs CO & works winters at the resort. He'll be returning to college next year at Ft. Collins CO.

Take care,

Ellen Bramblett

Hey Ellen!

Thanks for responding. I live in Tahoe, Cal. and was doing some spring skiing on Donner Summit when the avalanche hit. Wrong place, wrong time. I've moved to Virginia to be with family and get help through all this.

Sounds like John has been on the same road I'm starting.
Nice to hear that he is recovering and living in Steamboat. Had some questions for you. Did John have the same surgery and how long did it take before he could start re-hab? Did he require any other surgeries(i.e. for the shoulder)? What is eleval and topomax, do they work with neurontin? Finally, I'm curious if John keeps his hand in shape. I've been told that my hand might need to be fused, but I'm not sure I want that done. How has John dealt with his hand and do you think any use can be obtained in the future?

I hope my brain turns off the pain "signals" soon. It is rough to hear that it took a couple of years for John to get off pain Meds., I hate them! Thanks again Ellen for all your info. I appreciate you time. I wish the best for John at school, Fort Collins is pretty fun!

Hey Ellen!

Thanks for responding. I live in Tahoe, Cal. and was doing some spring skiing on Donner Summit when the avalanche hit. Wrong place, wrong time. I've moved to Virginia to be with family and get help through all this.

Sounds like John has been on the same road I'm starting.
Nice to hear that he is recovering and living in Steamboat. Had some questions for you. Did John have the same surgery and how long did it take before he could start re-hab? Did he require any other surgeries(i.e. for the shoulder)? What is eleval and topomax, do they work with neurontin? Finally, I'm curious if John keeps his hand in shape. I've been told that my hand might need to be fused, but I'm not sure I want that done. How has John dealt with his hand and do you think any use can be obtained in the future?

I hope my brain turns off the pain "signals" soon. It is rough to hear that it took a couple of years for John to get off pain Meds., I hate them! Thanks again Ellen for all your info. I appreciate you time. I wish the best for John at school, Fort Collins is pretty fun!

Hey,

I got hurt in a "ski accident" too (march 07). Lost a ski in deep snow and ran into a tree. (http://www.leftarmbandit.org/2007/03/wh ... o-you.html)

I'm sorry you have to go through this. It's really not that much fun.

You might think about trying Lyrica instead of nerunton. I switched about a year ago and Lyrica works better for me.

Keep your head up. Its a long rode but there is hope.

People on this site are great and when you are ready to be active again check out some of the slings. They are a huge help. I've got one that Dan makes and love it.

Cheers,
Joel

Thanks Joel!

What a great Web-site you have created. Our injurys are very similiar. I'm like you I can't stand being non-active and this is driving me crazy. The information you give on your site is great. I'm going to look into Lyrica because neurotin gives me very little relief. Running is a big part of my life. Along with pedaling and skiing I run year round. Wondering how long it took you to start running again? Cool pictures, and Dan's sling looks bomber. Anyway, thanks for giving me so much info. Wondering if it would be cool to send you a e-mail with some other questions? Seems like you know a lot about this injury.

Thanks again
Mike

Hi Mike, Welcome ! My son James had an atv accident in 2003 when he was 11. Hes 16 now. Hes had 3 surgeries. His c5 & c6 were injured and c7,8 &t1 were avulsed. He is a patient at Mayo in Rochester also. This past June he had the gracilis transfer and were still waiting to see some results also. If interested, just e mail me if you like. Good luck to you !

Hey Mike,

I was a little slower then some people on this site. It took me about 10 months to start running again and about a year to get serious about it. Mostly that's because I didn't have the right sling. A normal one just doesn't work. Before I started running I did a lot of swimming. One arm freestyle and a side stroke. I think that Robin started running with in 6 months or less.

Feel free to shoot me an email about anything I'm joel.rosinbum@gmail.com.

Cheers,
Joel

Hi Mike,

It took me years to start running because I couldn't find a good sling, like Joel. I finally made my own, back before Dan's were available.

I also recommend swimming & biking!

If you want more info on my activities & story, check out my blog at:

http://challengedathletesworld.blogspot.com/

Heddi

hi all my son is heading fos his first muscle transfer in feb, mark was not involved in any accident so his was cauced by a virus,he is now 29 he was diagnosed over 6 years ago, so we realy dont know what to expect so any info would realy be appriciated thank you

joy