I have recently been struggling with 4 months of dizziness and I am finally hopefully getting some answers. I have been reading a lot of the posts on here recently and I think I may have MAV. However, after my MRI, they found an Arachnoid Cyst sitting on my balance nerve right near the entry point of that 8th nerve into the brain. However, I have visual snow (that visual aura that comes with migraine and is constant) which makes me think that this might be MAV?
Are most MAVer’s 24/7? The reason I am at a loss right now if because I don’t seem to have any “triggers” for the migraine and more of just a constant state of vertigo. It’s like a slow rotating and internal movement (feels like a pendulum inside of me). I have my VNG/VEMP tomorrow and the day after which should give me lots of answers.
What gives me hope is that it may be the cyst (it seems to ‘coincidental’ not to be it–with it pressing on that specific nerve) and I will eventually be able to get this removed and I will go back to normal. The thing that makes me think I might have MAV is the visual snow and an occasional headache, but the dizziness is constant. I’ve tried nortriptilyne and it pretty much did nothing. Can you guys give me any feedback? Thanks
I’m no doctor, Nick, but it certainly sounds like the cyst could be playing a role in your vertigo. Do you know if the VNG/VEMP will be able to show if this is or isn’t your problem? The fact that you have a constant aura (visual snow) makes me think it isn’t MAV as auras generally aren’t constant. But again, I am not a doctor (just a hypochondriac, lol).
Yeah, those were my thoughts exactly. Thanks for the reply. Im pretty sure the VNG and VEMP will be able to tell what the cause of my dizziness is…? Im not sure. Have you had one before?
For me, my symptoms started in July, they scheduled me for an MRI at the end of September. The day before my MRI, I SWEAR a big bump appeared on my head. I’m super observant & it’s in a place that my hand would always be when I rest my head on my hand. Anyway, I told them about it and went in for my MRI. They told me it was a Thornwaldt cyst. The neurologist couldn’t even tell me what it was, said it was nothing to worry about and that it wasn’t related to any of my symptoms. Now, maybe I’m nuts & it was always there but I really think it wasn’t :).
I’ve also had the VNG done; what did it show? Any changes in your symptoms?
Well, my vertigo has been pretty constant for the past 5 months and they said that is unusual except for a central problem, even including MAV, even though many of you would disagree. The cyst I have resides right next to the balance nerve and compresses the part of the cerebellum that controls balance and gait. So…it is hard for them to assume that it is NOT this. I am going to be having surgery very soon, which is scary, but hopefully will resolve the constant state of vertigo i have had. My vertigo is a CONSTANT slow spin, that changes with my eye movements. It all seems to be connected.
I looked up Thornwaldt’s cyst. Where in your brain is it located?
The cyst is in the temporal area on the left side. If I run my fingers straight up from the top of my left ear, I run into it. It sticks out. I just keep picturing those kids from grade school that would shave their heads & had really lumpy heads ;), that’s probably what I would look like! I also noticed around 7th grade a large dip in the crown of my head. My mom & I had never noticed it before and it’s pretty significant. Every new hair stylist notices it and it grosses people out when I make them touch it–hehe, just close friends- I promise I’m not that creepy!!
When is your surgery scheduled for? When this all started, I was worried it was something that might require surgery. I also have a small chiari malformation that found in 6th grade after a concussion (when my classic migraines started for a year or so). They’ve said it’s causing no spinal fluid blockages & therefore nothing to worry about. However, at first I was concerned surgery was necessary. I was preparing myself to go through with it though to get rid of the terrible symptoms.
I would agree with you that it definitely sounds like your cyst is related and for the sake of getting better, I hope so.
I wish you the best & lots of relief!