Pseudotumor Cerebri

[justme15]

Has anybody else been diagnosed with this?  I have, and may have to have a LP shunt placed!

[Ninanna]

I have. I have had 2 episodes, both caused by drugs. The first was from the birth control pill. Other than diagnosing me with it and stopping the birth control, nothing was done and everything went back to normal.

The second was right after my transplant. It was wierd cause the symptoms were slightly different, I had no headache at all. They did an LP (my first ever) to measure the pressure and it was off their scale. Not exactly what you want to hear with a needle in your spine!  They drained some fluid to lower it. I had another one a week or two later to drain more fluid. I developed a spinal leak, and rather than do a blood patch I was just on bed rest for 4 days and it healed itself. By that time they had taken the offending medication away (tacrolimus) so I didn't have any more pressure issues.

The second episode really messed up my vision. At one point it was so bad they didn't think I would be able to drive. By some miracle it improved a lot. I still have issues, but it's not enough for me lose my determination and keep me from what I want to do!

Good luck and I hope you don't need a shunt placed!

[Joe]

My daughter was diagnosed with this when she was in high school. It was so bad she missed almost half of her Junior year. She had spinal taps done for temporary relief, but ultimately had an Ocular Fenestration done that finally gave her long term relief. It's been almost 4 years since she has had an episode.

[justme15]

interesting. i just saw a doc who told me the ocular fenestration was too risky, and he didn't recommend it. he recommends a LP shunt.

[Joe]

My daughter had hers done by a surgeon that pioneered a procedure that radically reduced the risk. (Yes, I acknowledge there is still risk with any surgical procedure.) He went in through the lower eyelid and vented the optic nerve that way. As I said, she has been fine for 4 years.