Originally Posted by thesuz

I have tarlov cyst as well. Was diagnosed in June 2012 - cyst is 1.5cm at S2. Pain sitting and lying on my back, mostly. I also have right arm pain on right side. NS said that is from stenosis at C6. There is also a small TC at L5 but he said to leave that. He also said I have tethered cord, which is a birth defect similar but not as bad as spina bifida as the cord is not outside the body at birth but inside, though not ending at the correct place. He suggests to clip it while he does the laminectomy for the TC. He is a NS in Maryland. There is another in Dallas. I have only found a few NS in the country who are willing to do this surgery and only major two hospitals in CA who are willing to let NS do their surgeries there. On the east coast, as far as I know, Johns Hopkins, Georgetown and others do not allow this surgery due to risk management.

I sent my films to a NS at Penn and he agreed that I have these problems but declined to do the surgery. I have not found anyone in FL. I am moving to FL in Nov due to my husband's health problems - will be near Mt Dora. Shands doesn't have a NS who would do this. Nor does Mayo in Jax. U of Miami is a possibility but I think the NS there doesn't do laminectomy - only fibrin "glue" procedure which I have read does not really work. I am really worried that I will be stuck with pain management the rest of my life if there are no new discoveries about how to treat this problem.

I don't know if I should name the docs here or if you should PM me.

Suz