Gary Is = L-1 Para for 34 years.....................
I had the DREZ. Twice. 4/2003 and 8/2003. Dr. Scott Falci. Craig Hospital in Englewood, CO. Neither one did anything to reduce my pain. I am a complete T10 paraplegic. My pain is all below level and can best be described as a severe burn in my buttocks and down the back of my thighs. In addition to the burn, I also feel a strong gripping and pulling sensation in my genital and rectal area. It is a continuous, diffused pain. The only time I'm pain free is when I'm asleep. The 2 DREZ surgeries did accomplish one good thing, however. They completely eliminated all spasticity. Everything below T10 is now dead, dead, dead. No movement at all. I did lose about 2 dermatones of sensation as a result of the surgeries, so I guess I'm now a T8.
I would advise anyone considering DREZ surgery for pain to think long and hard about it before going down that road. The operation takes 10-12 hours and it requires about a 14 day post surgical hospital stay. It then takes a few months at home to fully recover from it. It's major surgery with a capital "M".
I’m a T5 incomplete (but with no anal reflex). I don’t think I have CP, per se, but I have fairly significant neuropathic pain. I have an intense burning pain from my waist down both hips through the legs. It’s fairly constant and ranges from 5/10 to 9/10 most of the time. I am able to concentrate for about 1 to 30 minutes before the pain intrudes and I am forced to acknowledge it. Unfortunately, changing position, etc. does not help. I also get a pins and needles / electrical shock type of pain through my back and legs. This occurs when I am hit or move. It also occurs spontaneously and sort of "sweeps" over my back and legs.
I also have strong spasms/spasticity/clonus. It’s taken me over an hour at night to fall asleep because of spasms/pain. Then, after an hour or less I wake up because of the pain. This is not as much fun as it sounds.
I don’t take pain meds because, first of all, I am allergic to opiods. Second, from what I have heard and observed from others, pain meds don’t treat the pain anyway, they simply dull the brain. The pain doesn’t go away, you just don’t care. The side effects seem too much. I’m dull enough without the help.
I have very little movement below my chest. Four neuro evaluations put me at 0/5 in the ankles/feet, 1/5 in the knee flexors/extensors, 2/5 in the hip flexors/extensors/abductors/adductors. My trunk strength is a little dubious and I have scoliosis.
I also have little sensory function and I cannot feel temperatures below my chest. I have no bladder or bowel function. This has not changed significantly in the past eight years.
I would be perfectly happy to lose what little function I have to be relieved of the pain and spasms. I’m not particularly concerned about return or cures at this point. Just coping with what I’ve got. I’m not a big athlete or anything. I have a defective heart and severe pectus excavitum (collapsed chest) with greatly diminished lung capacity, so aerobic athletics is out. Even when I was able to run I could only run two miles at most – no matter how much I ran. I’m also congenitally blind in one eye so I have no depth perception. I can throw a ball at you, but I can’t throw it to you. Sports are a waste of my time.
I was wondering if the DREZ procedure would help, or what about cutting the entire cord? Indeed, cutting the entire cord might even be preferable; as there would be not doubt then and I don’t think I have that much to lose. Is a spinal block a possibility? What could go wrong?
George, how much function did you lose? Did you have any movement or feeling before the surgery?
this surgery has been around quite some time. barry corbet (late editor of new mobility mag) wrote about his surgery yrs ago. unless things have changed, they won't do it on cervical injuries due to the dangers of losing 2 functional levels. barry wrote about the relief of pain but he also lost sensation.
not a lot of these surgeries are done it seems, despite the yrs the procedure has been around.
you can search cc; this has been discussed before.
Do you have any information as to what happened to Barry Corbet?
I looked into it and spoke with each surgeon as I searched for some respite from the CP.
Without exception none would even consider it indicating as an ambulatory incomplete they could guarantee a chair.
the 2 surgeons who know me well and know I'm suicidal I told I'd trade pain for a chair both said that there is a very high probability I would still have severe pain and just will not perform the surgery.
The Ketamine Kitty
All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR
Next time I die make sure I'm gone,
don't leave 'em nothing to work on JT
And I ain't nothin but a dream JM
I didn't lose any function as a result of the surgeries. I lost all spasticity and a couple inches of sensation and that's it. As far as I know, no surgeon will do it for a cervical injury. Sometimes I think the only workable trade for the pain is death. Believe me, I think about it every day.
Thanks for giving me something else to mention to my neuro surgeon. I know its not for everyone but I like to be armed with as much knowledge as possible. I see my neuro surgeon tomorrow after having had a myelogram Monday of last week. I thiink it's the first time that I have actually ever hoped I did have something wrong with me so that they can fins the cause of my pain. I have horrible pain right at T-4 where my supposedly complete injury is that feels like someone is stabbing me in the back with a knife. It stays right there and doesn't travel anywhere else which the docs always seem to find odd. It used to come on here and there and i'd take pain meds but now it tries to come on all the time. On top of that, I now get horrible burning and tingling in my stumps (both of my legs are also amputated above the knees). That's why I say "supposedly complete injury" because I obviouly have something down there, who knows though, I read that people with complete injurys can still have pain down there but it may be in the brain instead. It could also be that I have some feeling but the amputations are causing "phantom limb pain". I have a feeling that I may end up with an intrathecal pump soon. Does anyone know if they put local anethstetic in those instead of or along with opioids? I have been in bed mostly for a few months and I am usually out and about but it has been beating me down. I have a newborn infant too and feel guilty about my wife having to do so much of the work. I am not suicidal (yet) but sometimes I feel like pushing my chair down the stairs and breaking every bone in my body just to end up in the hospital and get proper pain medication but then I realize that even that medication doesn't work all too well anymore so then I feel trapped and hopeless and live in fear that I am going to be stuck like this with no way out.
Guns don't kill people. Daddys with cute daughters do!
Okay - Not going to get into the depth of my pain - It is BAD nasty mean unrelenting and a stop sign to life!
Last week my spouse and I went to Craig for the 3 day evaluation to see if I would be a candidate for the DREZ. We had a great learning experience as after 32 years in the chair I have never had an evaluation! The trip was well worth it in many ways.
I am a ʻgood candidateʻ. I will lose several levels (from an L-1 to a T-9) - this even if the surgery is not successful. Doctor Falci did a great job of explaining the pros and cons, and just what it is that he does during surgery. I felt comfortable with all the tests done on my body and felt the professionalism of the staff.
I will need to have an MRI and a CAT scan of my spinal cord sent to Craig to see if there are unknown damages to my spine, like a cyst or damaged discs, or any other damage that would have to be repaired before the DREZ could be done. I wold also need to have some sort of a heart strength test maybe an EKG to see if my heart was up to the 12 hour surgery.
At this point in time I feel that I have no other choice to rid my self of this 20 plus years of chronic pain. I have been in the chair for 32 years but the pain for the first 12 years was manageable with Darvon Percodan Ibuprofun in large doses but now, even with a 75 mpg Fentynal patch 24/7 the pain is unbearable.
Gary Is = L-1 Para for 34 years.....................