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Joined: May 28, 2012


Posted by @lillyfam, May 28, 2012

I have been Diagnosed with Syringomyelia and I’m wondering if anyone can share of any Neurologist at Mayo you may have seen with the same DX. We are a Military family and have been told that we may move to ANY place we choose and we must choose this week. I’ve been going to Kosairs in Louisville Ky since diagnosed and feel they have me running in circles with no relief. My pain level is always a 7-10 acupuncture 2 times a week as well as physical therapy, not helping and Doctors seem to not be familiar enough to help me. Searching for help in a desperate way. God bless



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Joined: Aug 13, 2012
Posted by @maryinkansas, Sep 30, 2012

Hello. I am so sorry to hear of your pain and your troubles. I have a cousin who was diagnosed with Syringomyelia. She was advised to go to a major metropolitan teaching Hospital that sees this condition more often. She had surgery in a Chicago Hospital and the surgery truly saved and changed her life. She went from having terrible pain like you have, migraine headaches, balance troubles to after surgery and physical therapy… to being back to who she was prior to being diagnosed. She went back to college, graduated, worked full time, married and has lived a very productive and happy life. I wish I knew a MD at Mayo Clinic who does this special surgery but I believe with a few phone calls to the Main Mayo Clinic phone number…they will connect you with the right MDs and Surgeons who specialize in treating Syringomyelia. I am pulling for you to be able to regain your health and life back.

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