Karin, I'm so sorry that you are having to go through this.
Just last night, I was speaking to a woman who's been dealing with large and progressing syrinxes for more than a decade. There are CSF leaks associated with them. When it's worse, the lower CSF volume generates severe spinal headaches. While you both may have CSF leaks your situations are quite different.
How certain are they of the CSF leak? Is there a way to prove it? Are there other conditions that have a similar presentation that can be ruled in or out?
When observing surgeries, I've seen CSF leaks about 5 or 6 times. It's pretty amazing to watch. One was fairly early in a 10 hour surgery and it was surprising to see the steady flow for hours as your body produces it in abundance. The entire volume is replaced every 6 to 8 hours (if I remember correctly.)
Has there been any talk of a "blood patch". In 15 years on the spine boards, I've seen this discussed many times. My understanding of it is that they inject your own blood into the epidural space. The clotting properties of the blood causes the defect in the dura to seal. I'm not a doctor, so please take everything I say with a grain of salt.
Good luck to you! Please let us know how you proceed. I look forward to reading good news!
Mark
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