9 replies to this topic

[j2cool]

Hello everyone,
I am new here. I am 36 married with 5 children;19, 16, 14, 10 and 8. I am 2 years post injury T-10/T-11 incomplete. I have good use of my left hip and left knee extention. And very little movement of my right hip. I can walk with leg braces and a walker although it is very tiring. I have cronic nerve pain in my butt that has been there since about a month after my accident. Currently I am on 300mg Lyrica 2x a day and 60 mg Cymbalta 1x day, In the past I have been on Neurontin. I had a neurostimulator for a year, I've tried TENS, hyptnotherapy, massage and holistic approaches and nothing has really helped with ny pain. On the "best" days I can deal with it but on any other days it is just unbearable. I feel like I have tried everything possible. I just set up a surgery to have my cord severed just above my injury. My doctor says that there is an 80 - 90% chance that this will end my pain. Of coarse I will loose the use of my hips and left knee, whitch to me is a fair trade for no pain. The thing that I dont want to lose is the fact that right now I can "get off" but if I have this done I will also lose that, fair trade? I dont know. The only other thing that scares me is that 10 -20% chance that this will not work, then I still have the pain but lose everything else. Just wondering if anyone else has had this done and also I would like to hear some of your opinions on this. Thank You

[Apparelyzed]

Hi,

Have you considered dorsal root entry zone (DREZ)?

A type of nerve surgery for postherpetic neuralgia that is occasionally used when the patient can get no other pain relief. The surgery destroys the area where damaged nerves join the central nervous system, thereby interfering with inappropriate pain messages from nerves to the brain.

http://www.ncbi.nlm....pubmed/11323137

It might be worth looking into.

Simon

[j2cool]

Thank you Simon, I have considered DREZ, we done an injection to numb the nerve roots that would be destroyed by the DREZ and it had no effect.

[biggdoggpa]

wow tough call bro!! i would keep trying every other method possible before doing that. at the end of the day no matter what it's a decision that you will have to be comfortable with!! the most pain i have been in was from a kidney stone and if its remotely close to that and for any period of time man i don't know!!! another concern i would have is given the 10 to 20% that it won't work, is this something that phantom pain could result? maybe Simon or someone else may be able to help with that question! have you tried acupuncture? extinguish every possible ave!!! believe me some people would be happy to be in your situation!! quads and para's!!! at least i know two that would!! good luck bro!!!

[Apparelyzed]

Hi,

What about a spinal cord stimulator?

http://en.wikipedia....cord_stimulator

Simon

[j2cool]

I had a stimulator for a year, it covered the pain but in order to get it to the settings had to be so high it was as bad as having the pain. I have not tried accupuncture for the pain because my insurance wont cover it and lets face it, living on dissibility, Im not rolling in the $$$$ so I have no way to pay for it. Has anyone else tried and had success with it? And I hope I didnt offend anyone with this thread, I know that there are A LOT of people that would like to be where I am, just as I would like to be where someone w/o pain is. It all comes down to quality of life and if you had a good chance to improve yours wouldn't you have to try? This was not an easy decision for me and even now I wonder if I will back out of it. Man life just isn't fair sometimes is it? I think we just have to believe that God still has a plan for us!!

[sumoski]

I am a 69 year old L1 - T-10 injured in 1976. You name it for pain relief and I have had it. My pain management group has now recommended that I look into getting evaluated for DREZ. I have found that there is also a computer assisted DREZ (CA-DREZ) and from the literature that I have read it seems that both DREZ and CA-DREZ are the same operation. The difference being how the dorsal roots are selected to burn. In DREZ it is done empirically and in CA-DREZ the selection is done using recordings of neuroelectrical hyperactivity. In the few articles I have read it seems that the outcomes for pain relief favor the CA-DREZ. Anyone have any information or know of someone who had the CA-DREZ?

The more invasive procedures that where done that did not help - Spinal Inplant Stimulator, two trials of implant pumps (outpatient and inpatient), trigger point injections, nerve blocks, and removal of harrington rods at age 66.

Bob

Apparelyzed, on 01 September 2011 - 07:13 PM, said:

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Hi,

Have you considered dorsal root entry zone (DREZ)?

A type of nerve surgery for postherpetic neuralgia that is occasionally used when the patient can get no other pain relief. The surgery destroys the area where damaged nerves join the central nervous system, thereby interfering with inappropriate pain messages from nerves to the brain.

http://www.ncbi.nlm....pubmed/11323137

It might be worth looking into.

Simon

[SSG.Bridges]

I feel you I am right there with you pondering the same surgery. trying to way the pros and cons but it is a very hard decision. But dealing with the pain that there is no end from is very difficult in its own. Keep us updated if I find anything I will let you know as well.. Best of luck to you

[Vanessamaee]

Personally if I was in your situation. I wouldnt do it. I am a T4 complete para. NO movement or sensation (except semi spotty on back) at all. I also have BAD nerve pain. It keeps me up at night and some days is almost unbearable. Feels like someone lit me on fire and the pins and needles 24/7. However Im also extremely stubborn. I hate taking medicine. The ONLY thing I take right now is 5mg of Midodrine for low blood pressure, without it, I pass out. I personally wouldnt do the surgery in your position. You can walk, even if its with assistance. I would kill just to have my abs back. The pain can be tolerated, its just whether or not you choose to. Sorry if this come across rude. but it just slightly irritates me that someone would CHOOSE to have their spinal cord severed. Hell Id be more than happy to switch and you can have mine, comes pre severed and everything. except you still have nerve pain. Since its not a 100% chance of stoping the pain, and you would lose ALL function below your inury, I say it'd be a pretty stupid choice. Go like 2 weeks using a wheelchair full time, this mean no ushing yourself with your leg like I watch some people around the Rehab center I go to do, and see how it is. I hate the fact that I cant reach crap anymore. Overall choice is yours. I just think the pain would be better than being a fulltime wheelchair user. Plus you can still get off haha Id kill to be able to feel having sex again.

Edited by Vanessamaee, 15 September 2011 - 08:58 PM.

[Tetracyclone]

At least 2 people on this forum have had cordectomy or DREZ. Both surgeries failed to relieve the pain or spasms. Take the failure rate very seriously. Acupuncture will not relieve pain of your magnitude but meditation can help you find a different attitude toward it.