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Thread: Syringomyelia???

  1. #21

    Exclamation new to sight - have syringomyelia - no dr will treat?

    Hi.
    My name is Rita. I have a thoracic syrinx that extends from T5-L1 per mri done in dec 2010. I've never been in an accident. I have had a neck and lower back fusion. I'm in extreme pain in my thoracic region. I'm from Syracuse ny. I've been to 4 doctors - 3 in nys and 1 from university of maryland. Right now they all say "don't touch it" and I'm currently on narcotics.

    Can someone tell me the best place to go for an opinion? I can't continue to live like this. I don't want to be on narcotics forever. I'm SO discouraged. Each dr I see seems scared to touch the syrinx. I feel like they know nothing about them. Can someone please relate? I'm willing to go anywhere. My quality of life is awful and I'm so discouraged.

    Thank you for any feedback and I apologize if I posted this on the wrong thread.

    Rita

  2. #22
    Primary syringomyelia can be associated with spina bifida and Chiari malformations. Have you been told you have this condition? It often does not show symptoms until adulthood, even though you are essentially born with it.

    You can get more information here: http://www.asap.org/index.php/disorders/syringomyelia/

    I will also ask Dr. Young to respond to your questions when he has time. University of Miami (FL) and Craig Hospital in Denver are two of the leading centers for surgical management of syringomyelia.

    (KLD)

  3. #23

    Thank you - need treatment

    Hello;

    Thank you so much for responding. I have been tested for spina bifida and Chiari -- negative for both.

    The doctor in Maryland said my spinal canal starts out normal and then gets very very thin. He ? trauma or radiation. I said "no". He told me that the size of my syrinx is very large and if it gets larger I need surgery. Why can't something be done now.

    The pain is incredible. I'm so sorry - don't mean to sound "whiney". I'm just very discouraged with our healthcare system right now.

    Thanks again for any help,
    Rita

  4. #24
    Quote Originally Posted by Rkimak View Post
    Hi.
    My name is Rita. I have a thoracic syrinx that extends from T5-L1 per mri done in dec 2010. I've never been in an accident. I have had a neck and lower back fusion. I'm in extreme pain in my thoracic region. I'm from Syracuse ny. I've been to 4 doctors - 3 in nys and 1 from university of maryland. Right now they all say "don't touch it" and I'm currently on narcotics.

    Can someone tell me the best place to go for an opinion? I can't continue to live like this. I don't want to be on narcotics forever. I'm SO discouraged. Each dr I see seems scared to touch the syrinx. I feel like they know nothing about them. Can someone please relate? I'm willing to go anywhere. My quality of life is awful and I'm so discouraged.

    Thank you for any feedback and I apologize if I posted this on the wrong thread.

    Rita
    Rita,

    How many of the four doctors that you have consulted are neurosurgeons and have done surgery to treat syringomyelia? If only one or none of them, then you should probably get an opinion from such a neurosurgeon. I am sorry but I don't personally know a spine surgeon in Syracuse.

    The two places in the United States that has the most experience with the treatment of syringomyelic cysts is Barth Green's group at the University of Miami and Scott Falci at Craig Hospital in Denver.

    Wise.

  5. #25

    3 were neurosurgeons

    Thank you Dr. Young:

    Three were neurosugeons. Two from New York State and one from Maryland. I also sent my films to the neurology dept. at John Hopkins - a Dr. Ahn. After he reviewed my films he called me and said he would not touch it.

    I do have a call into Miami now. Does a syrinx of such size (T5-L1) cause like a crushing pain? I have that in my thoracic area especially and it is worse when I breathe.

    Can't something be done? I'm only 45!
    Thank you so much!
    Rita Kimak

  6. #26

    Exclamation please help - atrophied calf also

    Dr. Wise;

    I also have an atrophied right calf w/a burning sensation. Recently, I've had awful "achy" pain in my legs.

    Is a syrinx extending from T5-L1 considered large? Could it be causing the above symptoms? Does atrophy continue to get worse?

    I've contacted miami - dr green. no reply yet.

    i'm scared. i feel like i've wasted time and want to know where all of this could lead.

    i'd so appreciate an answer.
    thank you,
    Rita

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