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Thread: New To Forum-Newly Diagnosed with Syringomyelia.

  1. #1

    Question New To Forum-Newly Diagnosed with Syringomyelia.

    Hi All,

    My name is Harold and I was diagnosed on 12/16/2010 with Syringomyelia. I had found out 8 years ago that I had a congenital Hemangianoma Spinal Tumor on my spine and I was told by the pain care center I was seeing that it would NEVER bother me.

    Needless to say, I was at my Diabetes doctor who noticed that I had a droopy eye lid and proceeded to ask me how much Pot I smoked......I was offended.....I told her none and she told me to get right to a neurologist so I went and I was tested for M.S. which was suspected until Dr. Warach saw the results of the MRI....he told me I have a Thorasic Syrinx that starts at T7 and goes until T10.....But as usual, because I am on Medicare and Medicaid, Dr. Warach did not tell me what to expect with this Syringomyelia...

    I have been having trouble walking and getting progressively weaker in my legs and dropping things out of my dominant right hand for at least 8 years and about a month after being diagnosed with the Syrinx, the pain set in my back in the thorasic area and it is horrid.....not to mention the fact that I have to struggle to walk to Mass General Hospital as I do not yet have a power wheelchair but I need one badly as I simply cannot walk any distance anymore.

    Is there anyone here who can give me some answers to the following questions?

    1. How fast can this Syrinx progress?

    2. I have been told that it is a terminal condition....How long might it take for me to die from this?

    3. Will I become paralyzed suddenly or gradually...so I can plan for the future hopefully?

    4. Who is the best person for me to see and get all of my other questions about this disease answered

    5. Is my Syrinx, given that it was caused by a spinal tumor considered a Spinal Cord Injury?

    I am hoping someone here can enlighten me...I have had such a difficult time with researching it online and trying to get the doctor who diagnosed me to give me straight answers on it.....I can tell you that I am in pain 24/7 mainly in my upper spine area and it usually bothers me the worst when I wake up in the mornings, and I have started to have trouble doing various daily activities such as in the bathroom (In and out of shower/tub and other more intimate tasks and I am getting extremely stiff especially when I drive....

    Thanks for any help in advance

  2. #2
    Harrybaby, I wish I had answers for you and hopefully someone will be along who does. I know there are a lot of threads on the forum about syrinx, as many of our members have this condition. The bottom line about most spinal cord issues seems to be that they are unpredictable and highly specific to individuals, no two cases exactly alike - so your doctor ought to be more forthcoming and helpful, but in my experience, that sort of inability or unwillingness to communicate is not unusual.

    I know how frustrating it is when you can't get the guidance you need. If you do a search for syrinx here on the forum, you'll find a lot of information - the search function is robust and has been a godsend for me on many occasions. Of course, the best thing would be for your doctor to answer your questions forthrightly! Grrrrrrr. At any rate, welcome to the forum and best wishes to you.

  3. #3
    I think you need to just walk into the ER at Mass General with your complaints. They see tons of patients on Medicare/medicaid and will not discriminate against you because of this. Have been seen by their neurology department yet? They are one of the best in the country. Go for it.

    Often patients with Syrinx are evaluated by Neurosurgeons who are spine specialists. But I think you need to see a neurologist first/as well, as surgeons often want to jump to surgery, but what you need first is someone to carefully listen to your history of symptoms, examine you carefully, and make sure you have had the correct Imaging studies. Bring copies of your scans to MGH if you can.

    Some of your story sounds like multiple issues. The syrinx in your thoracic area of the back would not cause a droopy eyelid or weakness/clumsiness of your hand. So those aren't related. Also, droopy eyelid is not usually caused by MS, but it can be caused by myasthenia gravis. Myasthenia can also cause weakness of the legs. So maybe something else is going on, and the docs haven't quite figured it out yet. This isn't a "one visit" problem. You need follow-up visits.

    If you are having progressive leg weakness, then you need to be seen immediately and this is the most concerning thing. Whether or not it is related to the syrinx we don't know until you have had a proper evaluation.

    Many people here have had Syrinx and it does not necessarily mean there is nothing to do, or that you are necessarily going to progress on a certain time scale or that you are going to die. I am sorry that your doctor has not properly answered your questions. If you can get to Boston, you should find someone there who will.

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