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New to forum, but hardly new to SCI Pain

paramarine16pparamarine16 Posts: 2
edited 06/11/2012 - 8:47 AM in New Member Introductions
Been a paraplegic (T11/12-complete) for nearly 14 years now and have been on pain meds (1600 mg/day methodone for 13 years steady) and a plethora of other trials (lyrica, neurontin, elavil, tegretol, trileptal, nortitriptyline, oxycontin, clonazepan and the fentanyl patch among a few others...). All of which has me today taking cymbalta and methadone.

Other procedures I have chased are epidural and trigger-point injections (marginal access due to bony structure since 2 stabilization surgeries ay Mayo) which were nonresponsive, and have had a Meditronic stimulator unit surgically implanted with a lead into the spinal cord--also a failure.

My pain has been a "burning" in the center groin--as if coming from my testicles--with episodic and completely debilitating "shooters" in my right illiac crest (along the top of the hip) radiating from a single-point in back around to the fron of the hip. The burning is constant and has been from the very moment I was cognizant of where I was following the initial stabilization surgery.

With the "shooters", I have not been able to correlate any causal positioning, or condition, with the exception of these (I will call them spasms although they are NOT muscular at all) spasms almost seem to be an autonomic disreflexic response to some past (hidden) medical issues I have had like osteomylitis (twice) and the occasional "responded too late to" UTI.

Lately (2-3 years now, I have been seeing these shooters onset with constipation issues (one can imadine with the narcotics I take) and have lasted for 10-12 hours with no recourse but to "squeeze through the pain with each spasm until it subsides--last for 20-30 seconds, with 1-2 minutes between spasms. I take morphine to try and mitigate pain, but it (as one would predict) may lessen the pain--which is completely debilitating as in a "9-10" on the pain scale--but causes more lethargic bowel actvity making the problem worse...

I have found that I can "irrigate" every 3-4 days (Sigmoid collostomy put in following pressure sore surgery for osteomylitis in the coccyx) and thereby keep these shooters at bay (at least those due to the constipation issues), but this is getting scarily consistent and makes me worry about what I am doing to my digestive system.

As one can imagine, I am at wits-end. I do work full-time at a major automotive interiors manufacturing company as a launch manager--but these medical complications are taking an awful toll.

Questions that I need answers for are:

1) Is there anyway to completely destroy these nerve endings causing this pain?
2) Isn't there a kind of "map" that could indicate which nerves are causing this a)burning and b)shooter pain issues I am dealing with?
3) What are the long-term deleterious effects of the (1600/mg/day) consistent dose I have been taking for over 13 years already? I am now 52.
4) Has anyone else been through these types of issues?



  • Sorry to hear of your pain. Hope you find the right Dr. to help and sending you a PM. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • paramarine16, have you brought this up with your doctor(s) at all? Just with your bowel issues, the amount of methadone you take, and your need to irrigate via your colostomy, I think you really need to have the best G.I. person you can find, as well as a board-certified neurologist, to manage your care. Just my opinion. If you do have these docs, and they're not able to pinpoint why exactly you're having this pain, perhaps an MD whose specialty is the diagnosis of illness (appropriately called a diagnostician) might take you down a new path.

    Do you currently have a pain management specialist? I do not know of any way to permanently deaden the nerves; your body would simply produce new ones in the area anyway (called collateral circulation). If you talk to a pain management doctor, he may have some ideas for a numbing shot at your iliac crest, where your shooters are.

    You can do a search on "dermatome map" to see which nerves innervate each area of the body. (I think this is what you were referring to.)

    I've been having pain radiating around my left hip and down the outside of my leg for about 6 hours now. I'm sure it's a temporary thing related to my current back problems, but I sure can empathize with someone who's dealt with this pain for so long.

    And I should offer a welcome to Spine Health. You'll find some smart people here who may share some of your experience, or at least offer their support. Please let us know your progress, we do care. :)

    Edited to add: I believe that a nerve block can be used to treat groin pain. (I'm a surgical nurse who has worked a lot of pain management cases. I remember a young soldier injured at war who had intractible groin pain. He underwent this type of block.) Hope that helps. :)
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  • hi and welcome to the forum! :H we are here to offer you advice and answer what questions we can. so glad you stopped by.. you will make lots of new friends here as well. please have a good look around and make yourself at home. stop by anytime! Jenny :)
  • Babybubbles (it is hard to compose any serious reply when it starts out with that introduction... :|

    However your advice is right-on-target and I do plan to follow up with a gastro-doctor. I do not have a current pain-management specialist as my last one implanted this transmitter as a last-resort.

    But the need to pursue the nerve-component of this is the best way to control this pain, at least short-term. The methadone I do take is fruitless against these "shooters".

    Hope you "temporary" sysmptoms are, in fact, just temporary and you get some relief ASAP. When you are in the midlle of it--any pain seems to be center of the universe!

    Thanks for the reply and kind words.
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