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Thread: New here: TM or Syringomyelia? Please help

  1. #11
    I have something similar. I did go to the Mayo in Rochester MN. If you go I would make an appointment with Weinshenker in neurology. Appointments take 2-6 months but once you have an appointment, you can go as a "checker." IOW, you could have an apt made this week and start checking the following. To get into specialties is easier than internal medicine (1-2 days waiting). I know a nice/cheap place to stay ($25 a day including food and laundry). John Hopkins is number one in neurology, followed by Mayo, Rochester. UCLA is in the top five as well as the Clevland clinic. I can't stress enough how important it is to get in good hands now -- the more you wait, the more damage and some are reversable in the early stages. I would go to the ER and demand a second opinion (another FULL MRI), blood work to rule out metabolic causes and infections -- first line of treatment is intravenous steroids to reduce inflammation -- responisveness to this will also help them rule out other things. Have you had surgery lately (last 3 months)? My first MRI they thought it was a syrnix -- but I got blown off and it is very likely my nerve damage could have been halted with proper treatment.

    Good luck,


  2. #12
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    I agree with the above. If Mayo is doable ask for Weinshenker. If Hopkins is easier ask for a neurologist who is in the TM Center. With Hopkins theywill send you what the costs will be and if you agree or can make payment aragements you can begin sending COPIES of your films and paper files. There is also a TM Center at UT-Southwestern based on the Hopkins model. I don't know the docs down there. Anyone have experience with Texas?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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