Does anyone have any experience with pseudotumor cerebri?

Question:

I was diagnosed with pseudotumor cerebri about 4 years ago. I went through 5 lumbar punctures and after that point about a year and a half later was told by the doctor I was fine. My symptoms are flaring back up and I am going back to the doctor has anyone else have this disease and what has been the case for them does it go away? What did you do to fix it?

Answers:
HEllO I have had ptc now for just about the same amount of time as you. I was on 1000 mgs of diamox then was fine for 1.5 years and then in feb of this year mine came back as well. To my knowledge there is no cure for this. I had another lumbar puncture in may and my levels were in fact up again. I am currently taking 500mgs of released tabs of diamox. Diamox does help with the pressure levels and the symptoms. Did your Dr. ever put you on anything or just give you the lp's?For some the meds do not work and they get regular lumbar punctures to remove the extra fluid.Others have to go to the next step which is a shunt. A lot of Dr.'s will tell you that if you have gained weight recently to try and loose that weight. I honestly think that is what started mine back up as I gained about 30 pounds. It is important that you have a regular neuro. Dr and a neruo. opth. dr if you can especially if your having trouble with your vision. There is a great group on yahoo for ptc people and their families that I belong to. This group has loads of information and support you should try it really. Just go under groups for yahoo and put in pseudotumor cerebri.I hope that this will help you out some. Remember you are not alone. And we are all here for one another. May God bless you.

I have had PTC fpr 3 years and it went undiagnosed till a few months ago. Doctors all told me I was crazy and kept giving me antidepressants which I refused. They said I had anxiety. Well I am on topamax and diamox. I am on a diet. I can't work. My symptoms are very disabling. I have done lots of research. Its could take years to go into remission or u may live with this the rest of your life. As far as the shunt they only should do that if u are in immediate risk of going blind. I wouldn't recommend it anyways. It doesn't appear to be the best thing from things I have read. Try these meds that I am on. They are the most common prescribed for this disease. This is a rare disease. I read only about 12,000 people in the world suffer from it.

I have PTC and it has me! I have had 15 surgeries since Sept 06 and I know that I am looking at number 16 soon (when my NS gets back in town from vacation)! My surgeries have all been from shunt revisions to find that right valve! We have not found it yet! Right now I have 2 functioning shunts, a VP shunt and a LP shunt and I am still having daily headaches and blurry vision. Some days, I have double vision and that is when I know that I have to go in for a lumbar puncture! Maybe you have a clog in your shunt?? Or maybe it is kinked? I would give your NS a call and have some xrays done to check it out! That is just me though!! I will keep you in my prayers.
Hugs,
Andrea

Does anyone have any experience with pseudotumor cerebri?

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