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Thread: Help please, my mother has a 9 level syrinx

  1. #11
    I have read all of the syrinx/syringomyelia threads on here since that is my diagnosis too. In one thread Dr. Young recommended Dr. James Harrop of Jefferson in Philly. Was wondering if Dr. Young would still recommend him as I have an appointment with him in December.

  2. #12
    If so, CAS1 that would be an easier trip since you are in NJ.

  3. #13
    Senior Member Van Quad's Avatar
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    I would advise you to discuss a course of inflammatory drugs for postop. My syrinx surgery was successful but subsequent swelling caused more damage.

  4. #14
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    Hi CAS1,

    I will first qualify my post to say that I do not have experience of a syrinx, however I know more about spinal cord tumors than i ever wanted to, and I would imagine that the surgical removal of both a syrinx and a tumor would be similar (but please note my initial qualification).

    We have just returned from Johns Hopkins, having done a huge amount of research about how (an where) to treat my son's tumor that was partially resected/removed by an Australian neurosurgeon (or more cynically, "butcher") 5 years ago.

    In the research both my wife and I did independently (me via neuorosurgical routes, my wife via oncology routes) we both came to the same conclusion that JH was the place to go. For me, one of the main reasons was that Dr George Jallo's name came up many times, and he is specifically recommended by many people here: http://spinalcordtumor.proboards.com...?board=general

    Having now returned from a 10 week stay in Baltimore (my son received radiation treatment as a result of the recommendations from all JH specialists) we have nothing but praise for John Hopkins. Both in the excellent communication in the many months leading up to our trip, and the experience at JH itself.

    Given KLD's comments about other centres having more experience and better syrinx surgeons, I would suggest you ask the specialist(s) at JH when you go there. I'm sure they will give you an honest response.

    Hope this helps...good luck.
    Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

  5. #15
    I have no suggstions as to which doctors are the best, but I had surgery for a massive syrinx (brainstem to L1) in 2006. If you have any questions about the surgery itself and the recovery, I would be happy to answer. I went to UMass Memorial Hospital, and was very happy with the care there. I still have a part of my syrinx remaining (t6-L1). This area was not fixed, but the area above it was repaired with decompression surgery. I would also agree with the other poster, and make sure that anti inflamatory drugs (steroids) are used before and after surgery. Good luck, I am hoping that your mother has a speedy recovery.
    Last edited by Sugarcube; 10-25-2012 at 02:16 AM. Reason: added detail

  6. #16
    Thank you all for the help. My mother is in the hostipal right now. She was having trouble breathing and feeling jittery so she called an ambulance. We're not sure if breathing trouble is from the syrinx or not. She is currently on Prednisone so it my be a recation to it?

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