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Thread: In pain management 5+yrs-about to try stimulator

  1. #1

    Angry In pain management 5+yrs-about to try stimulator

    I'm 39 years old and have been dealing with chronic back pain for years...I had been in a car wreck a few years before I started pain management. I had twisted doing some house work one day and about 2 weeks later, I ended up at the urgent care clinic AGAIN. They did an MRI and found something and they consulted a neurosurgeon. The found a syrnix in my spinal cord. I didn't know what it was, but it was a fluid filled cyst in the middle of my spinal cord, which he believed was most likely congenital and not caused by the car wreck. Either way from 2004 to 2007 he "monitored" it and my pain didn't cease. He sent me to PM and I began treatments like injections, RFs and epidurals. I had a discogram (OMG!!!) and he found 2 torn discs at that point. Well, in 2008 at a routine check-up with the neurosurgeon, he was doing the checks on my reflexes and I didn't have one in my right foot/ankle---within a week I had surgery to place a catheter to drain the cyst to stop the pressure on my spinal cord. I was told off and on throughout this period of time that the cyst couldn't be causing the pain, it was the discs...after the surgery, I noticed an ache, in my right leg. He had me go to the ER for a doppler to make sure it wasn't a blood clot. This became a constant pain. I didn't have it before the surgery and after the surgery he told me that I wouldn't be more than 80% in that right leg...told me I had a foot drop. The foot drop through the years caused be to fall, trip and last year I fell and broke my wrist. It was evident to me it was because of my foot drop because of the grass and dirt on top of my shoe. Well, this year I fell off my porch. I was so paranoid because of him, every time I fell or slipped, I went to see him. He described it, when I had the surgery, as a delicate thing and I was afraid of something causing my to be paralyzed, which he said could happen. The neurosurgeon off an on stated that it was the cyst causing some of the pain-he contradicted himself and became dismissive. He never said after the last surgery follow up to keep check on the catheter and just kinda dismissed my concerns at that point. The last time I saw him and had an MRI, oh, everything's fine, the cyst was still draining and the cath looked good. He told me he had several cases of people similar to mine in the PM facility upstairs from his office, after telling me all these years it wasn't the cyst. After my last fall, this past August, we discussed my past surgery and the fact that he said they put 2 caths in to be double sure it doesn't clog, he looked on my chart and he said, "Oh, looks like we just put one in for you". When I had my surgery in 2008, he said it was a rare surgery and it was hardly ever done...the size of the cyst he told me was the size of a half dollar then, compared to 2004 it was smaller than a quarter, I guess. Either way, the pressure had caused partial paralysis in my right leg...I don't think another neurosurgeon will touch me now, much less admit he was negligent in not monitoring this better, after he's operated on me. His nurse, whom I didn't discuss my wanting my records, sent my records to me about a week after my last visit. It was gonna be too expensive for me at the time to get them, but I didn't even speak to her, it was the receptionist. Made me wonder if she was just being nice or something else. My PM doctor has wanted to do a SS on me for years because the treatments and the meds weren't helping. The neurosurgeon was against it because they couldn't monitor my cyst with MRI if I had the implant. So now the neurosurgeon suddenly says ok, that it may be best. Sounds like a kiss off. In the records his nurse sent me, every visit he contradicted himself, in his own notes, that the syrnix was the cause, most likely, of my pain. Confused about what to do about all of it. He should be accountable for the damage that I know was caused by him not keeping an eye on the growth of the cyst, permanent damage, and was caused by him. I'm not saying I wanna sue, in Alabama, I've checked, malpractice laws are extremely "tight" I was told. I'm screwed if I start having signs of paralysis and the cath gets clogged, but the PM doctor says this would at least get me out of pain possibly. If anyone has any ideas or similar situations, please let me know. I know this is a book, but I really don't know where I stand. The catheter is very close to where they would have to put the leads for the stimulator. Is it worth the risk in anyone's opinion? HELP!

  2. #2
    The only observation I can make is that they don't work for everyone, per my current pain doc, she's seen a number of short trial where the placebo effect dominated (including me) my trial was cut short due to complications.

    A lot of bad news here on this board including me and to me the worst was the inability to MRI. They say tehy are removable, but there seems to be a time line, year maybe 2, and how it was put in. I can't get mine out.

    Also I'm going for a pain pump trial. the last doc who did it just shot morphine into my lumbar (typical) i lost bladder control and he said oh well and that was that.

    New doc says it is invalid to inject at the inury and not expect this. SHe's going to cath my spinal cord at the high T level and titrate up and "play" over a few days. She'll try Prialt which despite the bad news here on the board may be my only option, been suicidal for 9 years and this is the end game, I'm considered salvage and been turned down by most hospitals etc who see my images saying they'll just make things worse.

    Net I'm telling you there are good and bad results from everything but evaluate carefully before deciding and look at the long term consequences.

    best

    ket
    Kindly,

    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

  3. #3
    Senior Member fromnwmont's Avatar
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    Oct 2011
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    I was slated for a SCS Oct of last Yr after the usual gamut of pills, injections and surgeries but on Sept 23 I fell thru roof and SCI became my new way life, I then read many not so great things about SCS aftrr finding this site and the DR telling me it was a good thing I had not had the surgery to install the SCS because CT & MRI would have been impossible... The major issue I had was NONE of the injections I had as they searched for the location that was causing my pain helped the pain Dr tried to comfort me by saying we will be able to stimulate several areas at once & adjust the SCS many different ways the other issue is COST all out my pocket but $10.000 one gal I work with has one for low back & sciatic pain a Yr ago she loved it "no more pills etc" but I heard her telling a co -worker last week she now needs pain pills for bad days. I wish you luck & please keep us informed on how you are doing. I read one woman say we hear about the ones that didn't help & little from the ones its helped...

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