pseudotumor cerebri..all other forums were FULL

[leenbeen525]

im a 16 year old female that was diagnosed with PTC in august '07. i didn't even realize i had it until i woke up with one morning with something floating in my eye and i thought i had just scratched the cornea.  however, when i went to the eye doctor he told me my optic nerves were so swollen and the pressure in my head was so high that a blood vessel had actually popped and what i was seeing is blood in my eye. (this eventually cleared up). however, i've had 5 LP's done since then and i tried the diamox for a while, however it started to cause chronic knee pain and i had to go on anti-inflamatory medication which fixed that problem but we also had to stop the diamox. i am no on 150mg of TOPAMAX a day which really doesn't seem to be fixing anything. i always have chronic headaches and am constantly on pain medication which barely takes the edge off.  i had field vision tests done every few weeks to make sure my vision isn't getting any worse, however my vision never gets any worse OR better. now my doctor wants to look into surgery either the optic one where they cut a small line to help drain before it reaches the nerves and causes eye damage, or they're also considering the shunt. if anybody has any information on these surgeries (e.g. how long they take, recovery time, etc.) it would be greatly appreciated, or just any advice at all on this subject would be helpful. my doctor doesn't know enough about this to fully explain to me what needs to be done to help fix it?!

[perryprophet]

Hello,
  My 14 yr old son just had pseudotumor cerebri diagnosis on 2/5/08 and had lumbo-peritoneal shunt placed by 3/20/08.  He was losing his vision very rapidly and we were blessed to have an aggressive neuro-opthomoligist who got the ball rolling for our son.  He is so much better, I can't even express it.  I would be happy to talk to you anytime.

[Caliber2005]

Hi,
No, I have not undergone a shunt surgery. But I have seen lot of people with this shunt in place and doing well. The problem with shunt is if it gets blocked and CSF drainage stops, then again it will cause pressure symptoms in brain.
I would post you the detail of surgery soon.
Bye.

[leenbeen525]

do you know this because you've had this done...or....? and i understand the shunt will help to drain the excess fluid but i wanted to know if you had any more specifics on the surgery...like i said such as recovery time actual time the surgery takes...and so forth.

[Caliber2005]

Hi,
How are you doing?
A shunt surgery is best option with programmable valve attach to decide on the amount of CSF flow.
A shunt is small tube like structure which is sterile, connects the ventricles in brain to peritoneal cavity in abdomen. Hence excess CSF is drained out,
Bye.