Posterior Fossa Arachnoid Cyst

Posted by cchamilton011 @cchamilton011, Feb 9 10:18am

Symptomatic Posterior Fossa Arachnoid Cyst at the cerebellopontine angle with tonsillar herniation (accrued Chiari Malformation Type 1) and idiopathic intercranial hypertension. But normal CSF fluid.

That's what I (24 female) have going on. I have been going to the doctors for many years regarding chronic headaches and migraines since I was around 7 years old. I am now a 24.
After countless CT scans, my cyst was never brought up, not one time. November of 2024, I had my first and so far only MRI where my large cyst (1.9 x 3.1 x 4.6 cm) was discovered. My first neurologist and his PA both said that the cyst was nothing to worry about, nor are any of the symptoms that were going with my headaches and migraines. So I went to a different neurologist where agreed with my saying that this cyst was the cause of ALL of my issues.
Some more backstory, I am also almost completely deaf. I have only about 20% of hearing between both of my ears, even had a reconstructive surgery June 2024 to try and correct it. Didn't work, so now I wear hearing aids. I struggle with almost constant ear infections, and struggle with hearing sometimes even with my hearing aids. Plus tinnitus, which is very annoying, but livable.
My ear doctor and my current neurologist confirmed that my hearing loss is due to the cyst pressing on my cranial nerve VIII.
Not only this, I struggle with my eyes. I started wearing glasses when I was 11, and they eyesight gets worse each time I go in to get new glasses, which is yearly. Not the end of the world, but during migraines I can't wear my glasses because my eyesight gets too fuzzy, and my eyes feel better not wearing them during my episodes.
Also have random face twitching. Not huge, just more annoying to me.

My migraines symptoms are the "normal" things that happen during a migraine like, nausea, vomiting, dizziness, sensitivity to light and sound, blurry vision, etc. But I also have more "unique" things that happens during a bad migraine, which is when I sit down, I'll fall asleep/pass out, memory loss, excessive ear ringing, and I slur my words a lot.

My now neurologist referred me to a neurosurgeon and the neurosurgeon said that he would have to "clinically agree with the first neurologist" because he agrees that this cyst is the not the cause of my migraines...

I apologize for this post being so long, but I would like some advice. I need someone who will listen to me and my current neurologist. If I have to switch neurologists, that's fine, but I need help.
Should I go to Mayo or maybe John Hopkins?

Interested in more discussions like this? Go to the Spine Health Support Group.

The Mayo Clinic in Rochester, MN is ranked above Johns Hopkins. With what you have going on, I would definitely see an opinion there.

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