Question:
Posted b4, but need help- pseudotumor cerebri AND ovarian cysts

I am scheduled for LAP RNY on MAY 31. I have spoken to some of you bout PTC, which i may have. I've seen my PCP, neurologist, gotten MRI, and now seeing opthalmologist and may get spinal tap. i get constant migraines, some of which last for weeks (have one right now) i get blurry vision, see bright lights when i drive, and starting to get nausea sometimes. the pressure on my eyes is so pianful, and my neuro says my eyes are cloudy. He also thinks that bmy birth control pills cause PTC, if i have it. so he made me get off them, problem is i was on orthotri cyclen for ovarian cysts and painful cramps. <p> I am getting medical advice and tests, but wanted input from you guys. my cramps have already come back and have only been of the birth control for 3 days. My biggest fear is sight loss from PTC and infertility from the cysts. . .    — Lezlie Y. (posted on April 28, 2002)

April 28, 2002
It sounds like you have PTC. I too was diagnosed with it and was having blurred visions and "shadows" that would come across my vision. You need to see a Neuro-Opthamologist. They are more experienced at diagnosing PTC. PTC was the whole reason I had WLS. I went the route of having spinal taps and taking Diamox but couldn't imagine doing that forever or having a shunt put in. I read so much about weight loss being the key to curing PTC. After surgery, and losing about 40 pounds, I never had another symptom of PTC. I still worry every morning that I will wake up with vision problems so I know how scary this disease is. The best thing you can do is lose the weight and be under the guidance of a Nuero-OPth. I really don't think the birth control pills are causing this. This is a disease that no one has been able to find what causes it except that most are overweight women of child-bearing age. I've never heard that birth control causes it. I wish you luck and feel free to e-mail me if you have any questions and let me know how you are doing. You can e-mail me at [email protected].
   — Lori W.

April 28, 2002
PTC can be caused by several drug birth control pills as well as tetracyclyn (for acne ) exsive vit a....in those cases it is considered secondary IH ( intercranial hypertension) secondary to taking the pill. here is a wonderfull websight with more info.... http://webeye.ophth.uiowa.edu/dept/IIH/pc_1.HTM this is my doc in IA he has researched this disease for years....i have lost 107 lbs so far and have had all symptoms of PTC (or IIH) subside...hope this info helps ! ps i have lived with PTC for abour 8 years and it is wonderfull to be in remission but weight loss in not a "garentee that it will go into remission!
   — bekka K.

May 1, 2002
Hello I have suffered with PTC for almost 10 years. My condition was brought on as a result of the Norplant, a subcutaneous birth control device. I had to have an optic nerve fenestration (decompression) of the right eye because I lost all peripheral sight. After surgery, I was able to see SO much better. My optic nerves were significantly damaged due to the high CSF (cerebral spinal fluid) pressure. I had to have a second operation on my right eye in December 2001 to repair some damage from the first surgery. The hole placed in the optic nerve was a bit too high which forced CSF to shoot into the retinal area. Make sure you continue to see your Opthalmologist regularly!!! Even though my eyesight was spared, there is long term damage. My PTC seems to be in remission lately which is good. Originally we made the decision to manage my disease medically (with medications and lumbar punctures every six weeks to control the CSF pressure). If I had known a few years ago that WLS would have spared me the agony I have suffered, I would have done it right away! Unfortunately, until recently the only surgical management of PTC was the placement of a shunt. Now that there is proof that PTC is cured (not just managed!!) by WLS, my life will change for the better!!! If you would like to talk about PTC and what to expect, please feel free to send me email. I would love to talk with you. Since it is such a rare disorder, it is nice to have a support system. Good luck.. and many hugs!!
   — KathieInHawaii