I am new to the group. My daughter started with intense headaches and loss of peripher vision in April 2008. She was diagnosed with PTC in August 2008, Diamox was given and would not work, had a lumboperitoneal shunt put in Sept. 2008 and was symptom-free for two weeks, then the loss of peripheral vision and headaches came back. Her neurosurgeon has given up on her. Her neurologist said just to overhydrate her and give her lots of caffeine...Her LP shunt is not programmable, therefore she drains spinal fluid 24/7. We are in IL right across from St. Louis. She has no insurance and is not eligible for Medicaid. I am going to check with ICHIP tomorrow to see if she can be insured with them. My husband retired, I have thyroid cancer and fibromyalgia and can only work part time from home. If anyone is in the St. Louis/IL area and knows of a neurosurgeon who specializes in PTC I would be grateful for the information. My daughter wants to go to nursing school but the headaches won't allow that and she cannot hold down a job because of the headaches. She is feeling pretty hopeless and as her mom, I am her biggest advocate and am trying to get help for her. Any advice you can give on PTC would be greatly appreciated. Thank you and God bless.
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