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Thread: Syringomyelia clinics

  1. #1

    Syringomyelia clinics

    Hello -

    I'm gathering some information for my partner who was diagnosed with primary syringomyelia (located at c6 and c7) in November 2008. The neurologists and neurosurgeons in Clearwater, FL (and Tampa) are not knowledgeable with this condition. They keep reverting to drugs as the solution right now and they keep saying "Hang in there, something will develop in about 5 years or so."

    Last October in 2009, my partner was involved in a car accident. She developed a herniated disc and torn ligament at c6 to c8. We are not going to operate because no one could give us a straight answer if an operation to repair those two conditions will affect her SM. Finally today, a orthopedic surgeon said it was his opinion that to operate would be foolish.

    I've read a few articles here but from 2008, are there any other good clinics in the States? Is it still the University of Miami and Craig Hospital? Is there any in the Northwest since we are talking about moving there next year.

    I'd like to get my partner to a doctor who knows what they are talking about instead of just giving her drugs and not really being proactive about the case. The neurologists here are just not very helpful at all.

    Your input would be greatly appreciated.

    Megan

  2. #2
    Megan, Dr. Scott Falci at Craig gets rave reviews from those treated by him.

    You may also want to post your question at the American Syringomyelia Alliance Project web site (http://www.asap.org/forum), where many others with SM share info and experiences.

    I urge you to extend the caution you've shown re: surgically treating your partner's disc and ligament problems to surgical solutions offered re: her syrinx. Sadly, for primary syringomyelia, it seems shunting is still the only option. Shunts have such a high failure rate, don't address the problem that caused the CSF to collect within the cord, may not alleviate any symptoms if the damage caused by compressing the cord is already permanent, and require cutting into health cord to place, they are (IMO) potentially as damaging as not doing anything when the syrinx is small or somewhat stable. Many surgeons won't attempt to place a shunt until the syrinx reaches a critical diameter (6-7 mm) or to alleviate current/prevent future symptoms, anyway.

    I hope your partner is able to find someone who's able to offer her viable options to improve her quality of life.

    Any kudos and hugs to you for being so supportive and protective of your love. Too many of us have had our partners bail due to our health issues and disabilities -- your commitment to helping your partner find the experts and make the best decisions speak volumes of what a good person you are.

    --THC
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  3. #3
    THC -

    I showed my partner your message and you were pretty much hitting the nail on everything. I am hoping to find someone who can help improve the quality for her, like you said. Our current neurologist will only see her once every 6 months just to go over medications. Very frustrating, especially for her.

    Thanks for your input!

    Megan

  4. #4
    Megan, glad to be of service. I've explored this subject pretty thoroughly -- I have post-traumatic syringobulbia (syrinx in the brain stem) due to numerous surgeries on/radiation damage to my C/T cord. I'm very lucky, though, as my syrinx has been stable for the 20 years since it was first discovered.

    Best wishes -- and please let us know where your partner does end up going and what they recommend.

    BTW, I have always found neurologists to be just a hair above useless. Neurosurgeons are the way to go, especially when you can find one who's not in a rush to cut you.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  5. #5
    I live in Clearwater. I had a C5-6 injury in 1970 then developed a syrnix in 1985. Downton Morton Plant just said I had 'whiplash' from a second accident. Suncoast did a myleogram showing a block at T-7. I knew then there was a serious problem as after my anterior fusion in 1970 my cord was open, the fluid moving normally.
    The MD who did the myleogram whispered in my ear, "they do myleograms from the top but don't do that here". I thanked him and went over to USF. There I had my 1st MRI ever as they were fairly new. The result was "they could see a suspicion of something around the site of my origional injury. They told me to go to 'The Cleveland Clinic" or "NYU".
    I went to NYU as that was where I had my origional surgery and I had friends and family in NY. At NYU they wanted to do 'exploritory' surgery without really telling why, what... It scared me as I have tri-cepts but it's so close. All friends, some from wheelchair sports and family tried to convince me to go foreward. I ended up telling them I would take a cab to the airport if they wouldn't drive me and got my sig-ot to pick me up at TIA.
    My 1st cousin who lived with us when I was a child had been on some kind of research in some Nordic Country that's slipped my mind was due back at Duke University where he was a neuro-oncologist later that month. I called him the day he returned. He had me mail MRI's and other tests as well as MD's Reports. I was surprised he made me an appt the next Tues (mon was Labor Day). Of course we had a hurricane stalled off the coast leaving this County an Island. Finally around 6am Monday morning a road opened and we drove up making it with a half hour to spare. I was admitted, had an MRI another EEG, melelogram from the top showing a block at C3-4ish. The last test was a level by level CAT scan with contrast dye. That clearly showed the syrnix. It was 9pm they sceduled surgery for 6am. I wanted to escape. But, where could I go? It was 1985 and we didn't have pc's. I decided Duke had a good reputation, my 1st cousin chose the surgeon so it was do nothing or suck it up and sign the papers.
    They opened the back of my neck and shoulders with a lamectomy. My cousin said you could see the fluid filled syrnix pushing against the cord from C-3 to T-7. They sewed a shunt inside the cord and supposidly the fluid started moving as it should. I was in ICU 2 days then I stayed at Duke for 20 days. They insisted I fly back so my boyfriend drove my car and my Mother and a sister flew up to fly back with me. Everything thing once at Duke was done so quickly but by the time I got there I'd been investigating and having the same medical exams over and over with only the 1 exploritory surgery offered.
    I had follow up MRI's done down here and sent yearly until my 1st femur break with metal put in.
    I'm glad I had the surgery then though today I don't think they use shunts. I lost function of my right hand, some trunk and abdominal muscles and am now in pain. I kept living like a para probably leading to my 10 breaks. I overdid life as a para and was a quad. Still fighting the power chair but pulled up carpet, installed a wheel-in-shower,get help three mornings a week, retired from work (explaining why a quad was disabled) and have burned out my shoulders. When I first heard the words syrnix and syrnigeomelia, etc every medical book said, death was the outcome. Thank goodness times and medicine have advanced. Hope my story helped some neighbor. A brother-in law and an x bro-in law are now local docs. Doctors here take their family members elsewhere if a neuro anything is needed.
    Last edited by dash; 05-08-2010 at 06:45 PM. Reason: I know about some docs

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