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Thread: Syrinx

  1. #1
    Senior Member mike's Avatar
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    Syrinx

    I am back in the hospital having an MRI to see if I might have a syrinx. I am 5yrs post injury but have recently had a large uptick in Cp. My questin is, do anyone understand what causes syrinxs years after the injury? I can understand during the healing process after the injury why this happens, but why so long afterwards? Is there any researh on this? Is there any programs in place to stop this condition with people having SCI?

    mike

  2. #2
    Mike,

    Sorry you are in the hospital. We will be thinking about you.

    Dr. Young or SCI nurse will have the real answer, but from what I have read (and they sure worked me over to see if a syrinx was present), there is this canal in the middle of the cord where spinal fluid is, which pulsates with the heartbeat. Apparently, and I could easily be wrong, nerve tissue which is damaged doesn't contain the pulsating fluid and a bulge or widened space for fluid inside the cord occurs.

    Now I probably have you mixed up with someone else, but do you have cauda equina? If so, I think the cord ends around L2 and so I dont' think syrinx would be found below that level, since it is just trailing ends of spinal nerves.

    I certainly hope they can find some answers for you. I think most cases of severe CP get worked up for syrinx. In my case, they put radiopaque dye in the cerebrospinal fluid with a puncture high in the neck just at the skull base (cisternal puncture). Then they did a CT later, a long time later, to see if any of the dye was appearing inside the cord, in the spinal fluid. That approach may be obsolete with better MRI, but they did MRI then also.

    We are thinking of you, so don't feel like the lone ranger in there guy!

    [This message was edited by dejerine on 11-13-04 at 01:54 AM.]

  3. #3
    Senior Member alan's Avatar
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    Mike,

    Make sure they compare this MRI to prior ones, if you have any available. As I've mentioned, I have a hole in my cord between C-4 and C-6 that was once thought to be a syrinx until a laminectomy of C-5 was done and no syrinx was found (it's just an area where the injured part of my cord disintegrated.) I get MRI's regularly, as my pains always keep increasing (which, as you know, can be caused by a syrinx), and they always show the hole has not changed size. The pains worsen for an unknown reason <sigh>. You may have a similar situation - comparing MRIs would show if that's the case, and protect you from being recommended to undergo surgery, be it untethering or shunting, that isn't necessary.

    Good luck.

    Have you checked any syringomyelia websites? Google finds plenty, if you want to look.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  4. #4
    Senior Member mike's Avatar
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    Thank you for you for your thoughts and concerns. As it turned out, I tested negative for a syrinx. My doctor said that the increased pain was just part of the condition. He suggested I go back on elavil. The bad news is after voiding normally for over five years I developed a high pressure bladder and an enlarged prostate so now I will need to take detropan for the rest of my life and begin cathing reqularly.Taking elavil which was the one drug I got some relief from, I can no longer take because it causes urine retention. Sorry to sound like a wuss, others have worse problems.

    mike

  5. #5
    Mike,

    It is hard to talk about problems. If you don't talk here, no one understands, and if you do talk here, it risks adding to the general panic, with everyone in an awful state and so you just wind up sounding like everyone else.

    I can put together some ghastly nights and days when I can't see my way out and just get angry and think no one could possibly be this bad or they wouldn't be able to take it . Then I come here and there are worse people. A lot worse. It sobers me, I tell you. I see people joking about bowel problems, about sex, and about a lot of things, but I don't notice anyone joking about pain.

    I am glad you don't have a syrinx. Have you had any luck with Klonopin. If you can't take Elavil maybe something like that might have a place. It makes you drowsy, and there is definitely withdrawal if you stop, but it may be something to consider.

    You can't work of course when you are sedated, but maybe like Dr. Young said a while back, lowered expectations can be our only resource if things get low. There are some nights on fire, with my muscles cramping and moving my legs/feet involuntarily, when my expectations get down to breathing. I can go a year absorbed in pain and suddenly realize how out of it I am and how I have missed doing something important, but find I have no plan. Hospital trips are sure good to get over with. Hope there is something good ahead for you.

    [This message was edited by dejerine on 11-15-04 at 03:03 AM.]

  6. #6
    Senior Member mike's Avatar
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    Dejerine

    As I read your posting, I wondered if it would helpful to set up a link for members to post how they deal with the stress of their SCI problems. I know for myself and my family, the stress can be unbearable at times. When I read some of the postings, I wonder where some of the members get the desire to even get up the next morning. Is it faith, family, belief in an ultimate cure, or all of the above? Perhaps such a link already is available. If so, please advise.

    mike

  7. #7
    Mike,

    I wish I knew how to say something real. Alan has my admiration for laying it all out. And for hanging in there. There are others.

    I think many here are kind of unbelievable for bravery. Everyone hangs onto something. I think faith is a big thing for some. Sense of duty is another. Finally it is just built inside us to know we are learning something, even if it seems everything we have learned is being jerked away from us.

    I used to have a bad problem with judging people who were different. Now I am the most different person in town and so I am glad of that little bit of progrsss. I hate being told that by others but to myself I hope the pain is not for nothing.

    I have a lot of compassion for others with pain. I guess that gives me something for my trouble, but man, the price is horrendous.

    I always like your posts, as you are very observant and steady. Hope you continue to find something sustaining. I think Dr. Young's idea on lowered expectations is essential.

  8. #8
    Senior Member alan's Avatar
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    Mike,

    Even though you don't have a syrinx, is it possible your cord is tethered? Was your MRI read by someone who knows SCI, or by a radiologist at an radiology facility who may not be familiar with post-SCI cord tethering?

    Have you taken desipramine? It's also a tricyclic, but is supposed to have fewer side effects than elavil (though not in my case - my bladder wasn't bothered, but my hands and feet were ice cold, so the doc told me to stop taking it.)


    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

    [This message was edited by alan on 11-15-04 at 09:49 PM.]

  9. #9
    Mike,

    I don't think anyone with an SCI can possibly be called a wuss.

  10. #10
    mike, syringomyelic cysts or syrinxes sometimes develop late after injury. The cause is unknown although the most popular theory currently is that adhesion and occlusion of the arachnoid space results in shunting of cerebrospinal fluid (CSF) into the central canal. Normally, as much as a liter of CSF passes from the brain to the lower spinal cord daily. The increased flow of CSF enlarges the central canal just as increased flow enlarges a river. What is the evidence behind this theory.

    1. Dynamic MRI studies of syrinxes show that there is pulsatile flow of CSF through the syrinx. If the syrinx were due to pressure in the central canal, one should not see flow. When the flow is high (>1.5-2.3 cm/sec), the cysts tend to be more aggressive (Source)

    2. People with syrinxes frequently have tethering of the cord and adhesive scarring of the arachnoid at and around the injury site.

    3. Removal of the adhesive scar and untethering the spinal cord often result in a collapse of the syrinx without shunting.

    4. Stenosis or compression of the cord is more likely to be associated with the formaton of syrinxes. For example, Arnold-Chiari syndrome is when there is compression of the upper spinal cord by either a herniated cerebellar tonsils or foraminal stenosis (narrowing of the opening in the skull where the spinal cord exits) and is frequently associated with large syrinxes.

    5. Arachnoiditis (inflammation of the arachnoid) due usually to infection or hemorrhage also tend to be associated with syringomyelic cysts. This is without trauma. (Source).

    Why do they develop late? It is not clear. One possibility is that there may be changes in ability of the spinal arachnoid to absorb CSF. This, by the way, is one of the reason for the development of hydrocephalus (accumulation of CSF in brain ventricles).

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