I had an MRI w/ w/o contrast and an ENG done mid october which were ordered by my ENT doc. I finally got a phone call on wednesday (missed it of course) and then another number shortly after from someone I didn't know. I just got a new phone and I had no idea I needed to manually set up voicemail so there were no messages. After a day of playing phone tag with my ENT, I decided to look up the other number and got a shock: it was a neurosurgical center. So I give my ENT another hour to call me back because I wanted to talk to them before calling the other number. Still heard nothing so I decided to just call the neurosurg center and see if they can tell me what is going on. A woman picks up, gets my info, and proceeds to set up an appointment for a consultation. Well I'm thinking, "A consultation for what?" " Read More "
So I ask what the referral was for and she said "hmm lemme see. oh a brain cyst." dumbfounded and a little hazy I proceed with making the appointment. As soon as I hang up, I burst into tears and am borderline hysterical. I sit in my car for about 40mins and then my ENT calls. I tell them I've already made an appt with the neurosurgeon and she apologized for that but was glad I was given an appt.All she tells me is that there is a cyst on my brain and that it is noncancerous from what they can tell. She left it at that. I had gathered myself a bit and asked where it was located and all she said was right cerebellar region. Thanks to hipaa and the wonders of online health charts/results. " Read More "
I now know it's a 2.5x2.1x2.8cm subarachnoid cyst on my brain located between the right cerebellar pontine fossa and the right cerebellar medullary cistern. It is displacing and pressing on my 7th,8th,9th, and 10th (trigeminal, vestibulocochlear, oral, and vagus) cranial nerves which is causing all of my issues (tinnitus, vertigo, extreme headache behind left eye, paresthesia, hemifacial spasms on right side, swooshing noises constantly, high B/P just in my head, TMJ, and more!)
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My stomach also decided to stop digesting my food due to the vagus nerve being depressed so I have to take Reglan 30mins before I eat in order for my stomach to do its job. The cyst is also flattening my cerebellar flocculus which is causing balance and coordination issues and speech issues. I have to cycle through words or I say the wrong words even though I know what I meant to say. IT's frustrating but manageable. " Read More "
My appointment isn't until November 12th so I get to freak out about it and the lack of info I was given until then. Given that the appt is with a neurosurgeon and not a neurologist, I know that something is gonna be done about it I just don't know what. I've been researching all the treatment options, reading journals, and watching videos. " Read More "
I just want it gone so I can resume normal function and get on with my life. It needs to go!!! I'll update once I know more in a week or so. Amber