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Thread: Syringomyelia???

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  1. #1

    Syringomyelia???

    I am a c7/t1 complete sci. I have had recurring problems with my syrinx. I have had four surgeries which have included: detethering the cord, laminectomy, expansion graft, and shunt placement. I scar real bad and things get all messed up again and I scar over my shunt, thus causing the cyst to grow again and my cord gets all tethered up. I have such bad neuropathic pain and weakening in my hands. I have heard of antoher procedure where they "unroof" the syrinx by cutting your spinal cord and sewing it open. Can you tell me of this or any other procedure that might help me.

    Thank you,
    Steph

  2. #2
    I will ask Dr. Young to respond to this.

    Where did you have your surgeries? Have you considered going to either the Miami Project or Craig Hospital? Both are considered the leading centers in the treatment of both tethering and syringomyelia.

    (KLD)

  3. #3
    Hi KLD,

    I have had two of my surgeries at the Univeristy of Washington Medical Center and the two most recent ones at Harborview Medical Center in Seattle, WA. They were performed by Doctor Richard G. Ellenbogen, M.D. He is Chairman of UW Neurological Surgery, Chief of Neurosurgery at Harborview Medical Center and President-Elect of the Congress of Neurological Surgeons. Have you heard of him?

    Steph

  4. #4
    I recommend going to Craig & seeing Dr. Falci. He and his staff are the best!

  5. #5
    Hi Kld,

    Will Dr. Young respond here??

  6. #6
    Hi Steph,

    I have no advise for you unfortunately but was diagnosed with syringomyelia from C7-T4 and then T7-T11 last week due to a spinal cord injury from cord compression from an osteophyte at C 4. My story to get my diagnosis is very long but finally I have it and am interested in meeting others who have SM due to SCI. I also have a twin sister with incomplete at C6 7 with central cord syndrome from a car accident. I am sorry to hear you are having so many difficulties with keeping it decompressed.

    Tanya

  7. #7
    Hi Tanya,

    I too have a twin sister. (fraternal)

  8. #8
    Dr. Young,

    Have you heard of the technique "unroofing" the syrinx?

  9. #9
    Quote Originally Posted by Steph P
    Dr. Young,

    Have you heard of the technique "unroofing" the syrinx?
    Yes, it is a reasonable procedure if the syrinx is not too long and the dorsal side of the syrinx is relatively thin, allowing the surgeon to cut it and lay the cyst open. While it may prevent the cyst from expanding, it may not eliminate the original cause of the cyst, i.e. the obstruction of CSF flow in the subarachnoid space around the spinal cord. While it makes the central canal continuous with the CSF in the surrounding tissues, if the CSF obstruction at the injury site, one possibility is that it will lead to syrinx formation above and below the injury site.

    In my opinion, the best procedure to try at first is meticulous removal of all adhesions between the arachnoid and the spinal cord with careful reconstruction of the subarachnoid space so that CSF can flow. Even without a shunt, this has been shown to eliminate the cyst in a majority of cases. This is the least invasive of the spinal cord. Many surgeons put in a shunt anyway. I am not certain that this is necessary. Since much previous experience suggests that a shunt along does not help and a shunt itself may cause some problems, this probably should be reserved as a second stage procedure if the first step is not effective. I think that unroofing the syrinx should be the third and backup step if the first two do not work.

    Wise.

  10. #10
    Quote Originally Posted by Wise Young View Post

    In my opinion, the best procedure to try at first is meticulous removal of all adhesions between the arachnoid and the spinal cord with careful reconstruction of the subarachnoid space so that CSF can flow. Even without a shunt, this has been shown to eliminate the cyst in a majority of cases. This is the least invasive of the spinal cord. Many surgeons put in a shunt anyway. I am not certain that this is necessary. Since much previous experience suggests that a shunt along does not help and a shunt itself may cause some problems, this probably should be reserved as a second stage procedure if the first step is not effective. I think that unroofing the syrinx should be the third and backup step if the first two do not work.

    Wise.
    What doctor should I consult with that takes the above approach mentioned? I have a shunt already, which helped short term but did not manage to prevent my syrinx from reoccurring.

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