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Thread: Syringomyelia???

  1. #31
    Quote Originally Posted by alan
    I was just turned away by another neurosurgeon who looked at my MRI reports and said that everything's stable, so there's nothing to do. Meanwhile, of course, my right arm gets weaker, my pains increase, and the sensation I had in the top of my back is replaced by pain. Perhaps when I can no longer use my right arm, someone will take the problem seriously.

    Maybe I should just stick a nail in the damn hole in my cord and drain it myself. And shove rebar up my butt to straighten my spine and improve my balance. Seems doctors have no intention of improving my situation. Bah.
    Hi Alan,

    I'm always saddened to hear of your constant pain, shoulder problems (scapula), scoliosis and all of your other SCI related agonies. It sure ain't fair.

    I'm a 28 year post-SCI T-4 with a syrinx creeping up to T-3.... I'll need to wait another year to get another MRI to see if it's progressing upward any farther. It may be the cause of my neuro-pain... I don't know. Luckily, gabapentin has my pain under control and I haven't lost any motor or sensory abilities that I know of.

    I sure hope some day you'll find a physiatrist, doctor and/or neurosurgeon who will take your problems to heart and try to find some corrective measures for them. Seems like you're talking to brick walls as far as your healthcare providers are concerned.

    Whenever I find myself starting to complain about this or that little thing, I think of you and some of others here who REALLY have it bad.

    Best wishes and best of luck Alan,

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  2. #32
    Quote Originally Posted by bob clark
    Hi Alan,

    I'm a 28 year post-SCI T-4 with a syrinx creeping up to T-3.... I'll need to wait another year to get another MRI to see if it's progressing upward any farther. It may be the cause of my neuro-pain... I don't know. Luckily, gabapentin has my pain under control and I haven't lost any motor or sensory abilities that I know of.

    Bob.
    Why do you have to wait another year if you already know it is creeping up? by then you could lose function. I would have someone in place to treat you pretty quickly if you start loosing function. The longer there is pressure on it the more chances it will become permanent.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  3. #33
    Quote Originally Posted by waters3
    Why do you have to wait another year if you already know it is creeping up? by then you could lose function.
    The length of the syrinx does not necessarily indicate that it is doing functional harm. A syrinx can be too narrow to shunt and if there are no overt symptoms, it may be monitored over time.

    C.

  4. #34
    Quote Originally Posted by waters3
    Why do you have to wait another year if you already know it is creeping up? by then you could lose function. I would have someone in place to treat you pretty quickly if you start loosing function. The longer there is pressure on it the more chances it will become permanent.
    Hi Waters,

    Quote Originally Posted by bob clark
    I've been a T 4-5-6 complete para for 28 years and just had my first 4 MRIs taken. One each of the thoracic and lumbar spine with and without contrast dye.
    I'm not one who enjoys going to doctors so I only go when it's an absolute necessity. I do my own doctoring... I find that I get better results and enjoy the company more.

    I had to ask my current doctor, who is associated with a SCI injury center in Gainesville FL (45 miles from here), for the order to have the MRIs taken. Had I not asked I wouldn't have ever had them taken. I'm also the one who requested a CT scan and spinal x-rays over a year ago and for the gabapentin prescription to relieve my flank pain. I learned about it here at CC. I'm in effect teaching her from what I learn here.

    As I've joked about in the past, she just enters the tiny exam room, asks me how I'm feeling (I tell her fine but with a "What do you think Einstein?" grin!) and she proceeds to squeeze my calf and then takes a glance at my back as I lean forward in my chair. Then it's "See you next month or in 6 months and the cashier is to the left as you exit the main door to the waiting room." Perhaps I embellished a tad on that last quote... but not much. After I pay the bill then I get my gabapentin prescription... never before. Maybe it's just me!?

    To your point though. Since this series of MRIs are my first there aren't any benchmark MRIs to judge my T-3 level syrinx to. For all I or anyone knows it's been there for 20 plus years not effecting anything. My doctor sent (hopefully) the MRIs to a SCI neurosurgeon in Gainesville FL for him to assess. Apparently he's the guy who handles all the "complicated" cases. I was supposed to set up an appointment with my doctor to go over the neurosurgeon's reading or opinion of my MRIs this month but I'm broke so will see her next month in February. Besides, I just made an appointment to see a podiatrist next week. One doctor appointment a month is all I can handle. Hey, it's easy to get an appointment with a podiatrist.... I guess they don't get very much business. You know they're easy when you tell them your only insurance is Medicare and you have no photo ID and they still accept you as a patient! There was a Seinfeld episode where Eileen was dating a podiatrist and they were joking about him (or podiatrists in general) "not being a REAL doctor". I have a scab on the boney protrusion of the inside of my right foot (by the big toe... initially caused by cheap, tight fitting sneakers I think... my feet swell quite often) that hasn't healed in a year to a year and a half. I forget when I first noticed it. The scab looks okay as does my toe... it isn't red or anything and when it (the scab... not my toe!) falls off every few months (yuk!) the skin looks fine. Then in a few days it starts to bleed a little bit and another scab starts to form. I think I might have osteomyelitis (infection of the bone) so finally decided to have it x-rayed and perhaps have a biopsy taken. I just noticed that the bottom of my right foot feels different than that of my "good left foot" (ha ha) and the bone kinda clicks a little bit and it feels pointy. Off with the toe!!! Either that and/or lots of antibiotics I guess... my liver is gonna love this.

    I'm gettin' old so I better get use to these petty annoyances.

    Until and unless I start losing any sensory or motor loss in my chest, arms, hands and/or fingers I believe I'll need to wait at least 6 months but probably a year to have another MRI (4 of 'em) taken so I'll have one to compare to the first one to in order to see if it's progressing upwards. I have no idea if the syrinx is what's causing the neuro-pain in my right flank/liver area or not. It could be a dozen or more things I suppose.... like severe nerve pinching in my lumbar region from sitting in a damn wheelchair for 28 longggg years. Plus I'm not looking forward to laying in that claustrophobic jack hammering MRI tube for another 3 hours either!

    I wish I could just check into a SCI center for a few days and have a bunch of tests done by qualified experts but Medicare doesn't work that way. They prefer/demand that I travel all over Ocala FL's "Hell's Half Acre" to a boatload of different unqualified doctor's offices and imaging centers or wherever and I don't have the desire or transportation to do so. Unless it bleeds chronically or profusely or I'm in severe pain do I ever want to see a doctor. Damn, I just spent $2500 out of pocket at the dentist's office. Hey, I still have 'em all and they look great... SMILE! I swear, that must be as exhilarating as the scariest ride at Disney World! The poor armrests on that dentist's chair.

    I might get lucky a have a quick massive heart attack and get this bullshit called life over with soon. One can hope.

    Sorry for the rambling... everyone knows I can't help myself.

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  5. #35
    Senior Member alan's Avatar
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    Thanks for the concern, Bob and everyone. I am losing sensation, getting pain where it hadn't been, and having more and more difficulty using my arms (besides pain, they feel weak and tingly, and more so when moved), but doctors aren't impressed. I don't know what to do, besides worry. I'm afraid I'm going to lose use of my arms, and more. I don't know what to do. They seem to get worse by the minute - syrinxes aren't supposed to move that fast, and I don't have one, they say.
    Last edited by alan; 01-12-2008 at 05:35 PM.
    Alan

    Proofread carefully to see if you any words out.

  6. #36

    Unhappy Pain meds???

    I have always had bad neuropathic pain and have been able to tolerate it for the most part w/out any pain meds. I have a very high tolerance for pain. My syrinx is causing excruciating pain in my belly. The last med I was on to combat neuropathic pain was Neurontin and it did noithing for me.
    Short of narcotics what is the best pain med out there for neuropathic pain?
    Are there any new drugs out there for muscle spasms? I take 240mg of baclofen and 14mg of Zanaflex per day and I still have bad spasms.

    Nate

  7. #37
    Quote Originally Posted by Tiger Racing
    The length of the syrinx does not necessarily indicate that it is doing functional harm. A syrinx can be too narrow to shunt and if there are no overt symptoms, it may be monitored over time.

    C.
    please don't misunderstand me. i didn't say the length of the syrinxes causes loosing function, but if it does move up past the point of injury it can. Yes one should have MRI's once a year to monitor their syrinxes.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  8. #38
    Senior Member alan's Avatar
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    Thankfully, For some reason, my upper chest and arms are better today (less pain, heaviness, numbness, and weakness, and I don't feel so weak overall. Right arm still has some numbness and weakness, but that's been
    standard for a while, and it's not nearly as bad as the past two days.) Yesterday was really scary - the arms were extremely painful, and I could barely move them, and it got more difficult as the day went on. I really
    feared I'd wake up today with no arm use at all. I went to bed at 7:00, because I couldn't really type any more,
    and could barely control my chair - unless I'm sick or the catheter blows, I never go to bed before I go in for the night at 10:00, no matter how bad pains are. To explain the difference between yesterday and "normal," when
    I'm in bed, I do movements of my arms in sets of 20 (that's sets, plural, for some moves, like rotator cuff.) Yesterday, I tried to do them after I lay down. By the fifth move, I had to stop - I couldn't do them. Today,
    I got full sets done, and into second sets, and I'm pretty much having only the usual difficulties using my arms - pain, posture, and popping scapulas.

    What could cause this? Deficiency in some vitamin or mineral involved in nerve conduction or muscle movement? The inner arm pains definitely felt
    like the central pain - the skin and muscles pulled when I moved, and all the sensations felt like the rest of my body. They came on so fast! I'm not taking any new meds, and I am eating (not much, but that's normal for
    me, and I have my Boost Plus and multivitamin daily.) I don't think effects of a syrinx would come on that fast, and I doubt they'd get better by themselves. Anyhoo, I'm much better physically and emotionally today.
    Alan

    Proofread carefully to see if you any words out.

  9. #39
    Quote Originally Posted by alan
    What could cause this? Deficiency in some vitamin or mineral involved in nerve conduction or muscle movement? The inner arm pains definitely felt like the central pain - the skin and muscles pulled when I moved, and all the sensations felt like the rest of my body.
    Have you seen an endocrinologist? Hormone changes can cause muscular and joint pain and fatigue.

    C.

  10. #40
    Senior Member alan's Avatar
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    I may have to. The trouble is tolerating the ride. I didn't sleep last night, and the numbness and weakness is back. It gets worse seemingly by the minute - I'm weaker now than when I typed before editing. It could be stress, too - my mom's in the hospital, and I'm worried about her and myself. My right leg is also throbbing like never before. I've tried every sleep med out there, and none even make me drowsy. Even the back of my neck feels different than normal. I thought I was over this yesterday, when the areas above the level of injury (C-5) felt normal again. Damn central pain - among other things, my back feels broken in half, as do my rubbing scapulas. which stick out through my skin, as do my vertebrae, my skin and muscles feel like they rip apart with any movement, I feel skinned and stiff as concrete. That's not half of it, and riding makes it all even worse. The lack of balance and scoliosis make me lean forward and sideways, and that aggravates the back, as well. Symptoms of a syrinx wouldn't be relieved by sleep, would they? This is really scary.

    Any ideas on something to make me sleep? And anything besides surgery to improve my balance - no brace or corset has worked so far?
    Last edited by alan; 01-14-2008 at 05:15 PM.
    Alan

    Proofread carefully to see if you any words out.

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