United Brachial Plexus Network, Inc.

I just recently learned of this site and I think it's great! I live in North Carolina but my accident happened when I was on vacation in Hawaii Sept., 2001 An unattended tour bus rolled down a hill, hitting me from behind, then went up an embankment and reversed course, came back and rolled over my right side. I suffered a right BPI (avulsed C5 thru T1 - arm and hand completely flacid), multiple breaks to my vertebrae, 6 broken ribs, broken scapula and clavicle, some minor paralysis to facial muscles, and head injury that's messed up, among other things, my temperature control system (a lifetime of hot flashes!).
I used to do landscape photography with a large format camera, and also my own darkroom work, so being one-handed is a big problem. The multiple breaks of my neck were not fuseable, so I have torticollis - my head is permanently bent down and to the left. Still, pain has been my main issue. Besides drugs I use self-hypnosis, relaxation tapes, and diversions (if the pain is low-moderate). I'd like to get off the pain meds so I'll have more energy, but my case manager says the DREZ can leave you with more pain than you started with and the pain pump can seriously malfunction. However, she says her clients have had good results with the dorsal column stimulator. So, how about it? Have any of you tried it? I really the sharing that goes on at this site, being able to learn from so many people's experience.

hello and welcome sandy. Wow that was some accident, glad you're here to talk about it. I read your replies to rusty about the pump and DREZ, and I have to agree with you about them. The stimulator also has problems associated with it, not least the fact that it has not been found effective in cases where there are avulsions such as yours, the nerves have to be in continuity for it to work, according to what I've read. Unfortunately there is little info available online other than the glowing reports from the manufacturers, and there have been no trials of its use for tbpi or peripheral nerve pain (as opposed to spinal and back pain, or cancer pain in terminal patients). Here's an excellent site listing the effectiveness (or not!) and possible side effects of various invasive treatments http://www.arachnoiditis.org.nz/content ... ments.html the stimulator is the second one listed. Other areas on this site have excellent articles about pain.
A couple of our regulars at www.tbpi-group.org have had the DREZ done, so far so good but as you said in the other post, the risks are big and there is a high rate of pain recurrence down the track-it's a treatment usually reserved for intractable pain after all other means have failed, and after the normal recovery period of 2/3 yrs has elapsed-as are the other invasive treatments due to the risks involved. The most usual pain control now being offered in the uk is nerve grafts, as these have been effective for pain even in cases where no functional gains may be expected. It seems as tho the intractable and ongoing pain in tbpi is associated with unresolved avulsions, so the grafts seem to stop the 'wrong' pain signals being sent. Am I making sense? lolol its complex stuff, but I am concerned that these extreme treatments are routinely being offered to some people. I would be interested to know if you find something that works effectyively long term, please let us know. The pain is the biggest issue for us, good luck in your search.

Thanks for the information and the link to the web site on invasive pain control procedures, Jenny. It's been very helpful to read the opinion of an unbiased sorce, rather than having to rely on information from those who would profit from my decision.

Im not sure anything about the dorsal column stimulator, cant help you with that. I will tell you that I have found a great deal of pain relief from SCENAR THERAPY. Its a neat little device, I get this now at therapy instead of a tens unit. Her is a link that you can check out. My accident was over 2 years agon and I havent taken pain pills in a year and a half! (my accident wasnt as bad as yours though) Glad you are hear to tell you story!
http://www.albright-centre.com/therapies.php?Page=1
~Courtney

Hi Sandy,
My prayers are with you. I have had RSD for 13 years now and I have had a DCS implant for 10 years. Mine was put in at the C4, and the generator was implanted next to my heart. I have had wonder response with this treatment. My RSD spread to my legs early this year, and I am recovering right now from a second DCS implant to cover my leg pain and muscle atrophy. I would love to talk to you more about this, I feel that this surgery gave me back my life. If you would like to know more of my story, please email me at maria200280@yahoo.com and I would be happy to talk with you. Hugs. (gently) of course.

Regards,
Maria

Hi Sandy,
My prayers are with you. I have had RSD for 13 years now and I have had a DCS implant for 10 years. Mine was put in at the C4, and the generator was implanted next to my heart. I have had wonder response with this treatment. My RSD spread to my legs early this year, and I am recovering right now from a second DCS implant to cover my leg pain and muscle atrophy. I would love to talk to you more about this, I feel that this surgery gave me back my life. If you would like to know more of my story, please email me at maria200280@yahoo.com and I would be happy to talk with you. Hugs. (gently) of course.

Regards,
Maria

I have had a stimulator since the age of 25 and am now 34 and have had a huge success with it. I am off of my pain medication except for the occasion nerve block due to changes in the weather or the occasional flare up.. I am treated at sequioa hospital in redwood city california and would recommend this device to anyone who has not had any relief from prescription pills. I have also had two children with the device in, (not recommended)and continue to have a much fuller life than before. The machine is quite durable and allows you to resume more activity in your life. I have rsd in both arms and hands and upper body and am in the 3rd stage so the damage is now irreversible. The machine has been a great relief for me.
E1Lisa

Yes, I have on and had had it since march of this year and yes it has worked for me but, I have had many problems with infections and pain. I was in a car accident and for many years i had so much pain and until it got to the point that i could no longer take care of myself or my children by just doing the little things around the house did i deside to get the stimulator put in and after surgery it was a big difference but, i have had 1 replacement and 2 other surgeries only if i could get over the problems i have been having i think i would be able to be a little normal again?
If you ever want to talk I'm here on the net a bit on aol let me know if you need any more answers ok? WHOOHDATSAGOOD1 at you know where? right? thanks for the ear
Taya

I had a similar ops, but then ditectly implanted onto the brain. Advantage is you can test it for a month or two, if you feel it doesn't have a sufficient effect you can take it out again (reveresable operation) It did not work for me, others decide to keep it... It is called a neuro stimulator (no drugs)

Take care,
Core.

Hi Courtney,

Your link doesn't work.
Best regards,
Core