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Thread: Help worried MOM!

  1. #1

    Help worried MOM!

    My six year old son has a syrinx in the upper part of his spinal cord that was diagnosed at the age of 2. He has begun complaining of pain at the location of the syrinx when running or jumping. His nuerosurgeon says this is atypical and believes it to be unrelated. i am not so sure. He does not have chiari nor has he sustained a spinal cord injury. According to his doctors he is a complex case. He underwent teathered cord surgery without succesfully shrinking the syrinx.. it in fact got larger . Has anyone experienced pain at the site of the syrinx? I am afraid our next step is to shunt the syrinx itself. thanks in advance.

  2. #2
    So sorry you and your son are facing this, jsc1171. I have no advice to offer, but this forum has many members who know a great deal about syrinx, its treatment and outcomes. Welcome to CareCure, and best wishes to you and your son.

  3. #3

    A syrinx at age 2. That just isn't fair. I think you need to see a pain specialist. I have spoken to a number of syrinx patients who had central pain from it. It appears your son's pain is just at the level of his surgery. let us hope it is just mechanical pain from the effects of upsetting the motion segment (bad enough), and not central pain, which is just an awful thought for a young child. Mechanical pain may respond to opiates, but I would exert extreme effort to find a pillow that matches the position your child needs, presuming it may be mechanical pain. There is not one pillow that suits all people but a pillow which keeps the neck in a neutral position is the one that has been most helpful for me. We had to make this by taking down from a regular pillow, and stuffing it into a flat pillow which a seamstress made. I weep for your child. Pay a LOT of attention to positions which make him hurt and then avoid them. This make take quite some doing. You may have to craft a recliner which is best, a pillow, or a car seat which does not aggravate the pain. I am not an expert in this, so rely on your own doc, but the statement that a syrinx cannot be associated with pain seems inconsistent with the texts. Have your library get on loan the latest edition of Patrick Wall's Textbook of Pain and read up. Central pain is not at level pain, it picks up all the ascending tracts coming up from below over the body.
    Last edited by dejerine; 10-09-2011 at 08:17 AM.

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