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New member with Syringomyelia

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in New Member Introductions
I am glad I finally found a place that has forums to openly discuss these topics. Is anyone suffering from Syringomyelia on the forums? I was in a wreck Jan 10, 2008, after five Dr.s including the emergency room Dr., multiple x-rays and two MRIs one with contrast and one without, I now know I have Syringomyelia. I am curious if anyone else is in my boat?

Pain has been constant burning for nine months to the day now. After the ER Doc, PCP, radiologists, and an orthopedic surgeon I have now been referred to neurosurgeon.
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Comments

  • Welcome to Spine Health. I don't share your issue, but I do know there are others here that have cysts of one sort or another. Not sure if any are exactly like Syringomyelia, however I'm sure they can relate. All of us can relate to the pain and frustration at getting a proper diagnosis and treatment.

    Just know that we are always here 24-7.

    Welcome.

    "C"
  • To add to my original post I am only 23 years old. The thought of surgery is a daunting one but I would do it in a minute if it would relive pain in the future. Thank you for your welcome and reply, I am sure I will have many questions in the near future.
  • cookie- welcome to site- I hope you find information that may help. I am glad they were able to diagnose and hopefully treat it. I have a lipoma of the lumbar area and a tarlov cyst in the sacral area (among other problems)..take care..jade
  • :) hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i don't have your problem either but as was said we all have pain in common. :T you will find friends here and lots of good information. good luck on your pain journey! Jenny :)
  • I also do not have the same issue that you have but am very familiar with constant burning pain. I hope that you are able to find some relief soon and please keep me posted with your progress.
  • Just wanted to bump your post back to the forefront so we can help you find a member or more that can possibly relate to your injury.

    Hope you are doing alright today.

    "C"
  • Hi Cookie,
    I too have been diagnosed with syringomyelia. I found out Aug.08.
    I have been to several doctors and have been online researching this rare incurable disease. There are several sites and support groups that i have found to be very helpful. not sure i can post them here but feel free to send me a private message and I will be happy to share.
    I had an accident and found it in T6-12 and T12-L1.
    I have been on alot of medications, which doesnt help.
    But, I am taking one day at a time, which is what we all must learn is the only thing we can do right now.
    There is 2 types of this disease Malformation Chiari, which comes from the brain,which I was tested after they found it in my spine. they sent me for a Brain MRI. you may ask ur doc to send u for one. I dont have that, it is only in my spine. But, this disease has been recognized as far back as the 1800's. as The Malformation Chiari is named after a doc called Arnold Chiari.
    There is so much to know about this.
    If you have questions, feel free to ask me.
    and take care of you!
    Katy :)


    “Celebrate the happiness that friends are always giving, make every day a holiday and celebrate just living!”





  • Phil ReynoldsPPhil Reynolds Posts: 5
    edited 07/23/2014 - 9:23 PM
    Phil Reynolds said:
    Anonymous said:
    I am glad I finally found a place that has forums to openly discuss these topics. Is anyone suffering from Syringomyelia on the forums? I was in a wreck Jan 10, 2008, after five Dr.s including the emergency room Dr., multiple x-rays and two MRIs one with contrast and one without, I now know I have Syringomyelia. I am curious if anyone else is in my boat?

    Pain has been constant burning for nine months to the day now. After the ER Doc, PCP, radiologists, and an orthopedic surgeon I have now been referred to neurosurgeon.

    Hi friend I to have Syringomyelia and it does get better somewhat as far as pain.I was diagnosed in Feb with Sciatic and now they think its SM causing all my symptoms.I am finally able to walk after over 4 months so I hope you are too and soon. Phillip :)
  • Anonymous said:
    I am glad I finally found a place that has forums to openly discuss these topics. Is anyone suffering from Syringomyelia on the forums? I was in a wreck Jan 10, 2008, after five Dr.s including the emergency room Dr., multiple x-rays and two MRIs one with contrast and one without, I now know I have Syringomyelia. I am curious if anyone else is in my boat?

    Pain has been constant burning for nine months to the day now. After the ER Doc, PCP, radiologists, and an orthopedic surgeon I have now been referred to neurosurgeon.
    Hi friend I to have Syringomyelia and it does get better somewhat as far as pain.I was diagnosed in Feb with Sciatic and now they think its SM causing all my symptoms.I am finally able to walk after over 4 months so I hope you are too and soon. Phillip :)
  • Hi friend I too have Syringomyelia and it does get better somewhat as far as pain.I was diagnosed in Feb with Sciatic and now they think its SM causing all my symptoms.I am finally able to walk after over 4 months so I hope you are too and soon. Phillip Smile
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