Brain Tumors Support Group

So a little history; I was hospitalized for double vision and high blood pressure a few months ago and they couldn’t figure out what was causing it so they discharged me from the hospital once the double vision went away. In July I was diagnosed with Polycystic Ovarian Syndrome (PCOS). The symptoms that came along with PCOS were the elevated levels of testosterone and DHEA-S. These are male sex hormones that when created in excess can sent the adrenal glands into overdrive and in turn cause high blood pressure, etc.

About a month ago, I went to the eye doctor because I had been getting frequent migraines. I figured that I better go in to get my eyes checked because I hadn’t been in three years and credited needing a new prescription to the headaches. Well, during my appointment the optometrist noticed that my optic nerves were swollen so she referred me to the ophthalmologist who noticed the same thing and then referred me to the neurologist. The neurologist explained to me that PCOS can cause something called a Pseudotumor which causes the optic nerves to swell.

Now the neurologist did an MRI that came back completely fine and decided to have a spinal tap done to check the entry level pressure of cerebral spinal fluid to confirm that I had Pseudotumor Cerebri. She told me that if my CFS level was elevated then they would need to put me on a diuretic to manage it. The normal entry level pressures are between 90 and 180. Mine was at 220; clearly a little elevated. They were able to bring my pressure down to 159 for the closing level. I felt AMAZING for two days and then out of nowhere was overcome with the worst headache that I have ever experienced in my entire life. The only relief I could find was to lay completely flat on my back. Finally, 6 days after the lumbar puncture, I had a blood patch done and the very next day the headache was gone.

When I went in for my follow up with the neurologist yesterday, she told me that my pressure was a little elevated but that it falls in a “grey” area. She also told me that because I felt better for two days after the lumbar puncture, it made her think that I do have pseudotumor cerebri but then I got a headache that was resolved by a blood patch and that was conflicting and made her think that I didn’t have pseudotumor cerebri. She told me she didn’t know what was wrong with my and to follow up again with the ophthalmologist. Needless to say, she didn’t prescribe me the diuretic. Let me just say that I was her very last appointment for the day, she was an HOUR late to call me back (her nursing staff had already left for the day) and she only briefly met with me to tell me this for about 3 minutes.

Now to my understanding, when you get the headache after the lumbar puncture it is caused by a leak at the puncture site. This can be proved when you get a blood patch and your headache goes away as a result. Is this not correct?

Despite the fact that my optic nerves were swollen, my entry level CSF level was elevated, I felt immediate relief after the lumbar puncture and PCOS can cause pseudotumor cerebri, this doctor is going to completely dismiss the fact the I most likely have pseudotumor. Is this doctor right about all of this or was she just rushing me out of her office because I was the last patient and she wanted to get home?

Can someone please answer me this: Can an individual have Pseudotumor Cerebri if they get a headache 2 days after their spinal tap that was resolved by a blood patch?

Any guidance, assistance, or even opinions would be greatly appreciated.

Thank you, thank you, thank you all!!

~Jess~

Jess, it is hard to say. Keep in mind, we are not Dr's here. The way I see it, when in doubt, get a second opinion