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Thread: It's Enough!

  1. #11
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    hey Max , my name is Larry , I know just what you are going through , I got hurt in 1985 and have had cronic pain since , surgery isn't always the answer so far I've had 23 operations and still have cronic pain , I've had 7 back operations , that ended up making my bladder misfunction , I have a Neuogenic bladder so I had the mitro stoma operation and that didn't work so they did a bladder bypass (ILEAL CONDUIT) they took a piece of my intestien and had that go from my kidney to a Stoma on the outside of my belly , nowI have to wear a bag to collect my urine then when the bag gets full I drain it ,my Bladder doesn't functioin anymore ,and all those back operations have made my knees also go bad I had to have reconstructive knee surgery on both knees ,and that didn't work either now I'm looking at knee replacement , I just turned 50 july 12 and have to live like this the rest of my life , if I had a chance to do it over again I wouldn't of had the first back operation , knowing what I know now ,well good luck and give it a real deep thought and get at least 3 opinions ,if you want to email me feel free LBUSH47@YAHOO.COM

  2. #12
    Max,

    for encouraging words on another possible cure, resiniferatoxin, which David described in a prior post, go to painonline.com, and see the Comment by jrueus to the article. "People with Central Pain are Weird"--to update on the status of RTX. RTX is where the NIH is heading right now. You cannot get it yet at any pain clinic, so be patient.

  3. #13
    dejerine, Wow, I didn't expect it to be that bad, I mean it's horrible, but not to that extent. Afterall it's been a year since I first felt this, But I hope that will be something for it soon.
    About the pump, money is not an issue, I will look it up. Is there anyway to diagnose this as the type of pain that this pump will help with. How invasive is pump surgery ?
    I can wear clothing when I go out, I tend to forget the pain If im having a good time, Sometimes It gets too painful, but then It returns to its regular state, Which is still bearable, Its those moments when it hits the maximum level that I cannot tolerate.
    Its really not up to me to decide if pain clinics wont help, as i said before, we do not have them here, and I didn't have this pain when I was in germany, although when i got out of surgery my doctor was concerned and asked me about it, I didn't know what he was talking about. A year passed with me not feeling any type of pain, then it started happening. It only has been 2 and half years since my accident.
    I hope that I don't get mentally to the state that I ask my self why I'm alive, I still have some hope, for a better future.
    Please let me know If you any of the meds you talked about is in production, Or if you found anything that helps your pain.
    Thanks alot for your input, much appreciated

    David, I'll make sure to check Dr.Wise's posts. Thanks.

    LBUSH49, Im gonna make sure to get peoples opinion before I decide to do surgery, I really thank you for your advice, and I wish you the best.

    Max.

  4. #14
    yep,LB is soo right.i would never ever go thru any surgery knowing what I know now either without getting those seperate opinions.i went into my herniated disc surgery wayyy to quickly thinking i would just "get it out of the way and move on with my life"big mistake there.

    i hadn't tried PT or any other options.although I did have the cavernoma inside my cord right below the herniated disc,and saw one suregon before that second one who actually refused to even touch my disc issue unless he could remove the cav first.that would have involved major in depth surgery on my cord just for a disc fusion.i said no thanks and moved onto the second NS who said he could do it.so I dove onto it just to have it "done'.

    that NS did my surgery but it was one ongoing nightmare after that with non fusion and another surgery to plac hardware to hold the area together so it would eventually fuse.well this NS ,when he blindly placed my plate and screws(it stated in the op notes that he could not actually visualize the area because of the imense amount of scar tissue there from the first surgery only nine months prior)he actually impinged my c 7 nerve root.it was all down hill from there with ongoing extreme pain with him seeming clueless in any way to try and help me and insisted that despite the fact that he knew I was having this horrid pain,he just couldn't say why.well I found out 'why' when I had to have my cav removed and that particular NS(he was my third opinion)actually saw with his own eyes while inside my cord,or on his way into my cord,just what the first NS had done,so he 'unimpinged "the nerve root for me(thanks doc).

    the thing is,if I had actually had the sense to wait for surgery until i had actually tried and failed with other modalities,i never would have lost two full years of my life to just wanting to get it over with.we didn't have the computer or the net back then or I definitely would have researched my other options before consenting to the fusion right away the way I did.

    when i found out my cav had bled twice and needed to come out,well you can bet your ass I got on the PC and researched everything before even consenting to that surgery.i also obtained three seperate opinions as well.i ended up with my current nightmare tho,and that definitely sucks,but going into the major spinal cord surgery,i felt confident that i had made the right decision,i actually really didn't have a whole lot of choice in having the surgery as to let it go would most certainly resulted in total paralysis when the third bleed happened,i was just running out of cord space.but getting those three opinions,well I knew i had at the very least,looked at all my options.

    If there is ever another way to treat something without having to actually undergo some form of surgery,it should at the very least be tried first just to see if that way may have worked before placing yourself in that position along with the huge list of risks associated with certain surgeries.almost ALL of my major medical problems and the resulting syndromes are all from the surgery.some just couldn't be avoided,but some I DO wonder about,but it just totally devistated my world the second my spinal cord was dug into.

    just make sure to fully research ALL of your options Max,before actually 'doing' anything that you cannot reverse,like surgery.in many cases,surgery just makes a bad situation much worse than if you had just left it alone and tried some less invasive approach.just be sure it is your only real option.then like i said,fully research it before consenting to it.and ask alot of questions of your surgeon.I had three very full pages of questions i needed answers to from my NS before I could really comfortably consent to this dude digging around inside of my spinal cord.

    Good luck Max,Marcia

  5. #15
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    HI Max,
    Have you ever tried tegretol for your nerve pain, I used to take it and it worked somewhat for the pain but I have found that for me the neurontin is better, but maybe for you the tegretol would be better, let me know if you have tried it or not and I can give you a link to some info on it.
    W4Me

  6. #16
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    Dear Max,

    JUST GO THROUGH A SUGERY OF SPINAL CORD STMULATION, I THINK THE COMPANY THAT MAKE THE STIMULATORS IS MEDTRONIC, CHECK IN THE WEB. OR TRY 600 mg. A DAY IN TWO DOSES Of 300 mg. OF LYRICA, IF YOU CAN TRY TO COMBINE IT.

  7. #17
    Senior Member alan's Avatar
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    They will (should) do a test implanation of a pump or stimulator to see if it helps before they implant either permanently.
    Alan

    Proofread carefully to see if you any words out.

  8. #18
    Marcia, I don't think that Im going to rush into any surgeries, Somehow after my sci i've become more patient. I even thought about doing any of the surgeries that people are now doing (Lima,Huang) but fortunately I never went through with any of them.
    Im planning to try some other pain meds and see what happens, I hope something will work for me, we'll have to wait and see.
    Thank you for sharing your story with us, I think we all some way or another have made a bad choice in our lives, but we live and learn.

    wheels4me, I didn't try tregretol. So far I've only tried neurontin, Im looking into other medications at the moment as well. Give me the link and I'll look into it.

    GRJC, I'll be leaving surgeries as my last resort, I will definately try lyrica. I just gotta figure out a way to get it.

    alan, when I go to the states, I'll make sure to check the pain pump, and see if it works for me.

    Thanks guys for your help, I really appreciate it.

    Max.

  9. #19
    Maximillian,

    There is a double blind study in the literature on Tegretol, a drug I have used without success, which shows NO benefit in Central Pain. The spinal cord stimulators put kind of a buzz or paresthesia in the cord which may help block pain. At this site, it seems most reporting benefit from this have cauda equina which is injury below L2 where the cord ends. alan is correct you should have a dose by catheter BEFORE you have a permanent pump implanted. They can either use opiates, prialt, or some other drug to see if any hits your pain. medtronic is the leader in pumps, but they do plug, sometimes we see here reports of them plugging around three years. You go to the pain clinic to have the reservoir refilled every two months for some pumps. The cost is very high, perhaps fifty thousand. Several new startup companies have brought out their own pumps, but Medtronic has been around the longest. However, their record is sketchy, so I suggest doing what Alan says before you would consider a permanent implant. The epidural block probably runs around a thousand, but if you try prialt, just the dose is three thousand. I have tried Lyrica and there are side effects which you can read at the posts here, it is expensive, and I do not feel it gives better relief than Elavil, which is cheap, but doesn't really do very much. The tricyclics will ruin your teeth because you stop salivating, so have a frequent dental check. I haven't seen any posts here saying Lyrica was wonderful but I may have missed it.

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