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Thread: Syringomelyia

  1. #1

    Unhappy Syringomelyia

    I was just diagnoised with syringomelyia on Sept. 4th 2009. I'm looking for any information I can get. My dr. said the hole in my spine isnt critical enough for surgery. He said I have to do spinal cord therapy and report if my numbness and tingling and pain gets any worse. I'm confused if I'm already experencing nerve damage why wait until it gets worse. I live in wyoming and not much chose on many neurologist. Does any one have any ideas or help for me????? I sure would like to hear from someone.

  2. #2
    Lost, I'm so sorry to hear about your diagnosis.

    While you're of course welcome here, the CareCure site is really geared more toward people with traumatic spinal cord injury. There is some very good information about syringomyelia here, but it's mostly info about syrinxes that are secondary to spinal cord injury. Doing searches for 'syrinx' , 'syringomyelia', and even 'untethering' will pull that info up for you.

    Let me suggest you also check out the American Syringomyelia Alliance Project (asap.org) web site. It has one of the most, if not the most, comprehensive collection of information about syringomyelia (SM) out there. The site also has a message board, and there are a lot of wonderful, caring people over there who have been where you are and will support you and help you find your way.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  3. #3
    Since you did not complete your profile, I have to assume you do not have a previous SCI which would mean that you don't have secondary or post-traumatic syringomyelia, but instead have primary syringomyelia. How old are you? This disorder is usually diagnosed in young adulthood, rarely later. It can also be associated with both spina bifida oculta and with Arnold-Chiari malformations. It would be important to be evaluated for both of these as well.

    Since you are in Wyoming (which town or city?) you are actually not that far from Denver, and Swedish Hospital and Craig Hospital there are leading centers for the surgical treatment of syringomyelia, although they probably see much more of the secondary type than the primary.

    And people with either type of syringomyelia are very welcome at our forums. They are not just for those with traumatic SCI.

    (KLD)

  4. #4

    sm

    Dr. Oro in Colorado is an expert in the field .R
    SM/ACM Surgery in 1999

    When the world says "give up"; hope whispers "try one more time"
    -anonymous

  5. #5
    And people with either type of syringomyelia are very welcome at our forums. They are not just for those with traumatic SCI.
    Of course they're absolutely welcome here. The question is, is CareCure the best place for people with SM to find the condition-specific information and support they need?

    CareCure has many, many valuable things to offer (I can't tell you how much I've learned here), but it's just not designed to provide the same depth of information on SM and SM-specific support as the ASAP site. IMO, as someone who has spent time at both sites, ASAP is just a better match for someone newly diagnosed with a syrinx, because ASAP.org is to SM and Chiari Malformation (CM) what the CareCure site is to SCI/D -- the best source of info and support on the Web for that specific condition. YMMV.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  6. #6
    just brought that up since you are so close to ColoraDO
    SM/ACM Surgery in 1999

    When the world says "give up"; hope whispers "try one more time"
    -anonymous

  7. #7
    Quote Originally Posted by SCI-Nurse View Post
    Since you did not complete your profile, I have to assume you do not have a previous SCI which would mean that you don't have secondary or post-traumatic syringomyelia, but instead have primary syringomyelia. How old are you? This disorder is usually diagnosed in young adulthood, rarely later. It can also be associated with both spina bifida oculta and with Arnold-Chiari malformations. It would be important to be evaluated for both of these as well.

    Since you are in Wyoming (which town or city?) you are actually not that far from Denver, and Swedish Hospital and Craig Hospital there are leading centers for the surgical treatment of syringomyelia, although they probably see much more of the secondary type than the primary.

    And people with either type of syringomyelia are very welcome at our forums. They are not just for those with traumatic SCI.

    (KLD)
    i'm 38. I live in gillette. My dr. has been vague on alot. I'm trying not to panic

  8. #8
    Senior Member nevada's Avatar
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    Lost there was a member from Gillette with a user name of white rabbit if I remember right. He was either the states attorney for the county or the city attorney for Gillette. I have not seen him post in a very long time but he maybe able to provide you with a name of a doctor

  9. #9
    Sadly, whiterabbit passed away last December.

  10. #10
    Lost,

    There are many members on CC (myself included) that do not have a traumatic spinal cord injury and there is an entire forum just for non-traumatic injury here on CC. Many SCI support groups and foundations such as the CDRPA included non-tramatics.

    I actually found CC searching for more informtion whereas info on my issues were not broad enough on different websites. I also found many sites heavily sensored with issues that needed to be spoken about more openly.

    I needed post-op info and wandered into CC where I learned so much more and had much in common with other members. You have much in common now too and may post-op if you choose that path. Actually you have similar symtoms as I did before my op for a SC tumor.

    Lost, come here with your questions/concerns often, we will help and welcome to CC, you belong here too,
    Pam

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