16 surgeries with Psuedotumor Cerebri in 2 years

I am 19 years old, and was diagnosed with PTC in 2005. In April of '05 I had a LP shunt put in. And since then I have had 14 revisions, and an emergency optic nerve decompression on both eyes. Right now I haven't had surgery for 6 months which is amazing. But my Neurosurgeon in Columbus is retiring. And I was wondering if there is any other way to look at this other than surgery all of the time. I have not been able to attend school, or college because my headaches have been so bad at times. Thanks for your time I hope I can get some answers.

[JainMD]

Hi Eri,
How are you feeling? What is your name? It feels from your post that you are an out and out active person who does not like to take rest and would like to move on and on.
Are you a female?
The majority of patients are young, female, and obese.
Are you on diamox tablets too?
What dose they are giving and how frequently they are given?
Weight reduction is essentially important?
The only way to reduce Intra-Cranial pressure is to either decrease production with help of Diamox or increased excretion i.e. through LP shunt.
I think you should ask neurosurgeons for Ventriculo-peritoneal or Ventriculo-atrial shunts over lumbo-peritoneal shunting. The reason for this preference is that ventricular shunts can be monitored for function using an extra-cranial subcutaneous compressible bulb and one-way valve (intracranial to abdominal flow) in series with the intracranial and abdominal ends of the shunt.
What all medications are you on?
Keep me informed about your disease progression and about your health in general.
Bye.

[eri_heath]

Thanks for helping me my name is Erica. Right now I am dealing with thinking its another broken shunt. I'm on Diamox when I need it, 250mg twice a day. The other meds that I am taking are B2, Topamax 100mg twice a day, Muliti vitiman, YAZ for Polycystic Ovarian Syndrome, Elivil, Nadorol(beta blocker), Flexeril when needed, and Darvocet for pain management.

I am a person who wants to go out and be active. Before I was diagnosed I was a year round softball player and now I usually don't feel good enough to go out for a long period of time. I did lose about 15 lbs, and it didn't make any difference. The LP shunt that I have is an Metronic adjustable valve. I have had that since March '07. This shunt seems to work a lot better than the other ones we have tried. My parents and I have thought about getting the VP shunt placed. But we are worried that if the shunt malfunctions as many times as these past ones, that they would be invading the brain area whenever it would break.
Right now as I said it feels like my shunt is broken. I was dealing with a low pressure headache that was controlled with the Darvocet. And two days ago it changed into a much worse headache when I stand up. So I will be going to my nuero-opth, and she can check if I am having a low pressure of high pressure headache and we will move on from there. Thank you for your time!