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Thread: Syringomyelia

  1. #1

    Syringomyelia

    One day in November of 2011, I lost feeling in my left arm down to the thumb. I called my doctor and he said the problem was neurological and referred me to a neurologist. I have medicaid (mental disability), so the nearest one was 100miles away in Baton Rouge, LA

    I was first diagnosed with a cervical syrinx extending from C5 to T1 of 2mm in December 2011. I have since been diagnosed with a second syrinx in the thoracic spine, and they haven't checked the rest of my spine.
    My symptoms have gotten worse. I now get numbness in both arms (ulnar neuropathy). I have hyperreflexia and very high C-reactive proteins. I lose feeling in one or two fingers at a time. I've lost feeling in my arm for 13 days. I go numb in my legs, especially when I'm sleeping, and I'm always rushing to the bathroom, when I can feel it. I constantly think I'm hot, I feel the sensation of air drafts in the house and the sun directly on my skin hurts. I am "jumpy" and twitchy.
    My neurologist said that he wanted me to see a neurosurgeon to "discuss the options" in February 2013. His receptionist set up an appointment with Tulane orthopedic clinic because "the neurosurgeon said no one accepts medicaid" The physician's assistant at the clinic ordered recent MRIs and found that I had another syrinx in my thoracic spine.

    He referred me to the Tulane Spine Center. I saw the orthopedic surgeon who said "Why are you here?? I can't do anything about syrinx, that's inside the spinal cord. If it were outside, I could shave bone or something." I said "well, I don't really know. My neurologist said he was referring me to a neurosurgeon to discuss the options..." He grabbed his reflex hammer and tapped on me all over then looked at the paperwork for a minute and said "well, you have hyperreflexia and high c-reactive proteins. Your blood pressure shoots up when you stand up. You should be looked at, but look here, we're a for-profit hospital and we don't take charity cases. My partner is a neurosurgeon but he doesn't see medicaid at all. I'll do you a favor and order some bloodwork to see if you need to see them down in infectious diseases and write you up a mobility impairment so you can get a handicapped placcard."

    I've tried working with my medicaid manager to find a neurosurgeon but we kept getting that "met our quota, sorry" line. She said I needed to get an out-of-network request from my neurologist, so I called and was told "he said he won't see you until you see the neurosurgeon" by his office. So finally, I called the medicaid ombudsman and they found a neurosurgeon within 20minutes. I called my neurologists office to give them the information and was told that it was illegal for them to send my information to the neurosurgeon's office. Still working on getting my information there...

    My depression already makes me feel like I'm not worth fixing. Just looking for any help or words or anything. I am so frustrated.

  2. #2
    Did you ever manage to get a diagnosis or treatment? Don't ever give up. I've been starting to experience similar issues and went to my neurologist today. He ordered an MRI. I'm looking to talk to others who have experienced the same issues. Good luck.

  3. #3
    Did you get help?

  4. #4
    The two leading centers in the USA for secondary post-traumatic syringomyelia surgery are at the Miami Project (University of Miami, Florida) and Craig Hospital (Engelwood, CO). Suggest you try to get your MRIs to those centers and request an evaluation there, if your insurance will cover it.

    (KLD)

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