Paula's email address is: lumbpaula@gmail.com
Paula says:
"I was diagnosed with thoracic, idiopathic syringomyelia in 8/08, with two thoracic syrinxes (upper and a long lower one) that during the course of 8 months "grew" together. No one in Maine either knew what the diagnosis was or had so little experience of exposure to it that I had to search in Boston for a knowledgeable group of neurosurgeons...luckily finding a group and doctor at Tufts Medical Center.
Surgery occurred in 6/08 and at that time they "discovered" that I had adhesive arachnoiditis that had literally "banded" itself around the entire upper part of my syrinx. They got to the spine with a laminectomy from T2-6, lysis of adhesions, and then did a duraplasty along the entire length of T2-6 to widen the spinal cord canal, hopefully freeing up the flow (with the removal of the adhesions), and, God willing, over time the syrinx will collapse.
However, I am guardedly optimistic and hope that the adhesive arachnoiditis doesn't glob up my spine with even more scar tissue.
Is there anyone out there with similar history or experience, and can you share your story with me?"
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