Question:
Are WLS risks worth not dealing with Pseudo Tumor Cerebri anymore?

I was diagnosed with PTC in Feb/1999 after almost going blind and have had optic nerve sheath fenestration on both eyes to protect my eyes. But I still have headaches and absolutely hate the LP and hate Diamox and can't take it anymore. I have tried to lose weight and seem to lose weight but then seem to gain it all back plus more. I actually weighed 218 when I was diagnosed 7 am up to about 250 now thanks to the dieting. I would like to hear from post op patients who have PTC and how it has affected your life. Do you still have to take the Diamox? I want to get pregnant but Dr won't let me until I lose weight (I need surgery to take care of some fertility issues...) and I think my only option now is to have WLS since I am 33 and am not getting any younger.    — Valerie Z. (posted on August 11, 2002)

August 11, 2002
Hi. I do not have PTC, but my neurologist thought I did for a while. I have many of the symptoms and fit the profile. I've had a chronic headache every minute of the day for months now, but had the lumbar puncture, then a blood patch. And its now diagnosed "chronic daily headaches" along with horrible muscle spasms in my neck and upper back. My point is, I have spoken with a few people who have PTC on this site, which I'm sure they will post to you, and WLS is pretty much a life saver for you. Up to 80 or 90% of patients who suffer from it and who have WLS feel significantly, if not completely better. I'm so sorry that your eyesight has been hurt so bad, I do think that having surgery will stop it from getting worse. I know what it's like to live in pain, and I only wish you the best, I honestly think WLS can help you a great deal!
   — Lezlie Y.

August 11, 2002
Hi, I am just 3 weeks post-op wls, but I do have ptc. My dr.s all recommended i have the wls to help with my ptc. I I have already (November 2001) had a shunt inserted in to my brain, because I lost the use of my right eye. I think my pseudotumor was one of the reasons my insurance approved my wls so quickly. I have had ptc for 7 years, and it still snuck up on me. I hope this helps with your decision.
   — Marian K.

August 13, 2002
val, i had (yes past tense ) PTC for 9 years and a LP shunt in my back wich failed numurouse times and my doc felt WLS would help and when My LP failed last october they gave me an option VP shunt (IN the brain) or Wls since my vision was still stable at that point( i had lost a lot before they placeed the LP shunt) they felt i had time to do the WLS and see if weight loss would help...IT HAS i am in permennt remission (they wont say cured because you never know with PTC and because i was actualy 145 lbs whan dx with PTC so it was unclear as to the bennnifits of weight loss in my case since i did not gain till after dx.) but at this point pressure is NORMAL and i am not on ANY meds for PTC (or for my arthritus and high blood pressure or congestive heart falure get the pic LOL!!!) i took 17 different meds for 90 years or so and now i take 1 (unithroid) plus vitamens!! so yes it was so woth it!!!!for me anyway....good luck in you choice.
   — bekka K.

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