United Brachial Plexus Network, Inc.

Hello all!
My accident was 8 yrs. ago, diagnosed as full LBPI (although no Horner's Syndrone), nerve graft surgery which fixed sublexation of shoulder but no arm muscle recovery, pain is at a constant 7 which is higher then from the start, I am on very low amts of meds because they don't do much, I'm an Aquarius with brown eyes and a nice smile and about 5'9" . Since my accident, I've had 6 members of my family pass, most recently my Mom, who died at the young age of 64 after a 4 year fight with ovarian cancer. My Dad has felt guilty over the years since he has had his own tragedies to deal with and has not gotten involved with my injury. But now, with the passing of his wife of 43 years, he is on a mission to "fix" me. I have been approved in July to have a spinal cord stimulator implanted , but I'm scared s--tless. I have not heard of a single person with central nerve pain to have any possitive results with this procedure. The device consists of two wires they feed up the back on either side of your spinal cord starting in the lumbar region and implanting the leads to your spinal cord in your neck region. The doctor swears that the only complications can be from anesthetization and infection. Has anyone tried this procedure and what where your results.

THANX
SUSAN

http://sci.rutgers.edu/forum/showthread ... 936&page=2

Susan,
Good to know you're still kicking! I'll try to chime in later. Don't have much time right now. I almost got an implant, but kept postponing it and decided to just hold off.

Here are some posts from a spinal cord injury website that is a great reference that I've used over the years. Think about posting your questions on there. If I remember correctly, the research I did 4 years ago on this indicated that it was less than a 50% chance of it working on nerve root avulsions, like we have. Also the surgeon skill that implants the device is important too.

Wishing you the best!!!

xoChristopher

(ps I'm 6'4" libra with bad credit )

http://sci.rutgers.edu/forum/showthread ... 936&page=2

search on pubmed for trails on SCS on BPI:
http://www.ncbi.nlm.nih.gov/pubmed/10820964
http://www.ncbi.nlm.nih.gov/pubmed/21307799
http://www.ncbi.nlm.nih.gov/pubmed/21243254

Hey Christopher old buddy old pal,

Thanks for the info. I am truly uncomfortable with this procedure, especially since the doctor was so flippant about it. The leads to the device are just too long and have a lot of room for mistakes and movement at any point along my spinal cord. Plus, I don't have Horner's Syndrome, and shoving wires or anything else around that area of my neck could lead to paralyzation in my face. I read that once the device is permanently implanted, you can no longer have MRI's, not the I'm going out for kicks to have magnetic imaging . Stimulators are supposed to be removable, but they also rely on scar tissue to keep them in place. Number one, creating scar tissue is never good and second, the dura membrane around your spinal cord can be ripped upon trying to remove the leads. Too many down sides! My direction now is bio-feed back which is what I was looking for in the first place, but that a different story for a different time.

Chris, if having TBPI has given you anything, it's given you the ability to gather and share knowledge on this blasted injury that plagues our lives. Thank you for all that you have done over the years. I've gleaned so much information pertinent to this injury from you. You're one of a kind! (and very tall )

LOVE
SUSAN

Susan!
You are most welcome! Don't be a stranger. Sounds like you're making the right decisions there, with the right kind of inquiry. I'm sure you're doc didn't expect (or want) your informed and rightly understandable questions.

You know that the biofeedback direction was my best shot at getting somewhere with this pain. At times it's far from enough, but it takes consistent practice too.

previous posts on my rtMRI biofeedback experience:
http://ubpn.org/forum/viewtopic.php?f=18&t=14652
http://ubpn.org/forum/viewtopic.php?f=18&t=13678

Christopher DeCharms
http://www.omneuron.com/technology.html
http://www.omneuron.com/technology2.htm


a great one and my favorite mad genius researcher VS Ramachandran: (phantom pain portion starts at 9:25)
http://www.ted.com/talks/vilayanur_rama ... _mind.html
(he's got tons on youtube and a great book, Phantoms of the Brain)

Go gett'm & don't give in!

xoChristopher

ps I do this, 'cuz I hate suffering, especially of others, especially when it's unnecessary, and even more especially when there's answer out there that they don't know about.