6mm pineal cyst nightmare

[PhxFemme82]

9 months ago I started experiencing pressure in/around my left eye. I went to an Opthamologist, result: swollen left optic nerve. I was referred to a Neuro-Opthamologist. By that time I had constant pressure on the left side of my head, my Narcolepsy got much worse (18 hours/day) & my vision changed in only my left eye. I have CONSTANT floaters, blurry vision, pain in/around eye & socket (worst part is along upper part of socket). I occasionally feel a stabbing inside my eye and randomly get flashes of light even when I don't have a lot of pain. I went to the NO, results: elevated left optic nerve. I got an MRI, only result: 6mm pineal cyst. My General Practioner at Mayo Clinic Scottsdale told me the MRI was negative, the pineal cyst wouldn't cause my symptoms and that was it. I went home and Googled pineal cyst & my symptoms match that of a symptomatic pineal cyst. I made an appt with the Neurology dept at Mayo but my GP put in comments that my Opth and Neuro-Opth appts returned negative results (not true) and so did the MRI. I ended up getting referred to a Physician's Asst in Neurology and he said it sounds like I have Acute Aura Migraines. I asked about the pineal cyst and he told me it was an incidental finding and wouldn't cause problems at 6mm. I am seriously doubting this since I have had migraines before and this is nothing like them. Also my pain has been constant for 9 MONTHS (pain degree varies). Now I have a constant pinched feeling on the left side of my head (along with the pressure) and have pain that shoots down the left side of my spine in the neck area and across my left shoulder. The PA ordered an MRV be done to rule out an obstruction and he wants to put me on Topamax. Any thoughts?

[rumpled]

Can you go somewhere else other than mayo?

You may well have migraines and all, but the pineal cyst should at least be considered - have they done any testing - as in lab testing for melatonin or other hormones? It is very close to the pituitary. If it is hitting the optic nerve, then something is going on. Get another opinion - outside mayo.

[PhxFemme82]

I have had a ton of blood tests. I have had an MRI and MRV. I had an overnight and day sleep test which is what showed the Narcolepsy.

[rumpled]

Take the copies of the results and go somewhere where you can get action and treatment.  I am a layman - but it sounds like you are symptomatic (duh to the docs) and so you need to push for treatment.