Psuedotumor and CSF Leak

[juliekah920]

After having surgery in 2004 to remove an ectopic pregnency, I developed a severe headache.  I went to my PCP who belived my headache was caused by stress but then found swelling in my optic nerve.  I had a CT scan of the brain which was normal.  I started on Diamox 250mg 3x daily and responded very well.  I stopped the Diamox in Sept. 2007

In Jan. 2008, I developed a runny nose that didn't really seem like a normal runny nose.  It would drip depending on my head movement.  It was clear and watery.  My PCP finally tested the fluid for glucose and it was 175.  He believes I have a CSF leak and I have followed up with an ENT and a nuerologist.  The ENT is going to be managing my case and has scheduled a lumbar puncture (with radioactive dye) to find the source of the leak.

I have essentially stopped leaking and have developed a pretty severe headache.  I did not have a headache when I was leaking consistently.  The headache is not as severe as when I was diagnosed with psuedotumor but cetainly similar.

My question is -  could the CSF leak be healing itself and the headache is due to increased pressure?  If so , could I return to Diamox?  I do not do well with medical procedures and do not want to have a spinal tap that could show inconclusive results because I am no longer leaking.

Thank you for your help.

[flipflopmomma]

my daughter is 6 and now has PTC...I hate this so much for her..I wonder if it will ever go away. Its rare for kids to have it. She is also on diamox...dang..I dont know what to do.
If anyone can help me with this worry ..please do!
hope u get to feeling better,  
   Kylie    maybe im not to leave my email but...  ***@****

[medchick0523]

Hey there :) I have PTC as well.. since October of 06.

I believe the CSF could heal itself, just like after a LP the hole eventually closes on its own. I just had surgery for an ICP monitor and my ventricle was punctured to insert a fiber optic monitor, but that very tiny hole allowed just a little bit of fluid to leak out and it was a couple of weeks post-op before my high pressure headache returned.

I would give your doctor a call, if possible, to gauge his thoughts on the situation, and on restarting diamox, if he is okay with that, propose that you try the Diamox for a couple of weeks, postponing the LP. The only problem I could see your doctor having is that a CSF leak means there is a tear in the meninges somewhere and risk of infection is increased as the barrier isn't there in a spot.

Best Wishes.

Samantha