Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
My PTC seems to be resurfacing. I do not tolerate Diamox well and my primary issue is papilledema. I only get mild headaches. So I imagine that my doctor will want to consider ONSF if my vision is as bad as I think it is.
Whenever I read stories about people's surgeries, they make it sound like they had a lot of choice in who did their surgery, as opposed to being referred to someone. Like, there are a lot of stories of people traveling hundreds of miles to see a specific surgeon. So... How does the whole process work, exactly? Can your neuro/opthalmologist refer you to one? How do you research your surgeon and find out if they're really qualified and experienced enough for your surgery? What kind of info do you need to look for in your research? If you don't trust them and you have to look a little further away (as in out-of-state), can health insurance still cover it?
Whenever I read stories about people's surgeries, they make it sound like they had a lot of choice in who did their surgery, as opposed to being referred to someone. Like, there are a lot of stories of people traveling hundreds of miles to see a specific surgeon. So... How does the whole process work, exactly? Can your neuro/opthalmologist refer you to one? How do you research your surgeon and find out if they're really qualified and experienced enough for your surgery? What kind of info do you need to look for in your research? If you don't trust them and you have to look a little further away (as in out-of-state), can health insurance still cover it?
If you can travel or are in Dallas area Dr. John McHennry is one of the best in the industry. He saves everyone's vision. He is purposely by two airports in Dallas because people travel from all over the country to see him. He treats the most complicated cases.
That being said, he is strictly there to be a doctor and save site. He has a ton of patients. He doesn't chit chat or have good bed side manner or coddling. He is soft spoken but straight to the point. This is fine with me as I am paying to treat this illness and not be my best buddy.
I would also go on FB and join Living with IIH, other suggested groups will pop us with folks just like us, I would join. We have "check in" and say where we are located for this purpose to tell people who the best doctors are in our areas. I hope this helps!!
Pip