Author Topic: Acoustic neuroma symptoms  (Read 1113 times)

mariposa_slo

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Acoustic neuroma symptoms
« on: September 24, 2024, 11:54:09 am »
Hello, thank you for excepting me in this group. First, my english is not the best and i apologize for that. I would be grateful if i can recieve some answers for my questions about AN. I live in a small country, Slovenia, where there are just a few patients with this diagnose, that's why i was looking for a group like this. So i was diagnosed with AN in may 2023,  in my left ear, measuring 5X11 mm, they decided to just keep monitoring it with MR every 6 months. In november there was 5,5mmX12mm and in may 2024 it showed no growth, so i have another MR  in may 2025. But i am wondering about my symptoms, feeling dizy, nausea, headaches, tinnitus ... some days they are unbearable and then it can be ok for a month or two and then again i am feeling sick for 2 days and so on....is this common in this situation, some bad days and then some good days? I would really appreciated if i get any answers from you. Thank you.
Irena

Crazycat

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Re: Acoustic neuroma symptoms
« Reply #1 on: September 26, 2024, 08:44:07 pm »
Due to the positioning of the cranial nerves (12 on each side at the skull base) the symptoms usually vary from one person to another. The 12 nerves are very close together, like a wire harness. As the tumor grows it gradually impinges on the surrounding nerves, causing an array of different symptoms, I.e., facial numbness, tinnitus, hearing loss, facial pain, balance problems and neck aches among other things I can't recall offhand. It all depends on the size of the growth and the direction it is expanding. Nerves are extremely temperamental, sometimes taking years to right themselves if moved or even touched.

I had a 5cm x 5cm growth and never once had any nausea or even a headache ( neckaches but not headaches). I was afflicted with double vision, which I still have after 19 years, especially when I look
to my left, which is the side of the A.N. Also, my left-side dexterity has been compromised because of what is called "cerebellar retraction". I' m left-handed and was a pretty good illustrator- not anymore.
My penmanship has been ruined as well and I used to have beautiful, flowing penmanship. Drawing was like automatic writing for me. It was meditative and calming. The feeling I got from it is completely gone; it's as if my brain has been short-circuited. As a musician, my left- hand dexterity has also diminished. This has actually proven worse than losing half my hearing.

All in all, my symptoms developed over a period of about four years. I remember being completely
disoriented when I entered a big, open and enclosed building like a store. My depth-perception was distorted. I was walking around convex vision as through a fish-eye lens with my head feeling like a lead-lined, helium balloon, floating above and behind me. If I was walking on a downhill incline and stopped, I'd fall flat on my face. Ironically, after my surgery and recovery, my depth-perception problems went away.

One more thing: I came through the ordeal with my facial nerve intact. One of the doctors told me there was a person on the surgical team whose sole job was monitoring the facial nerve, making sure they didn't get too close to it during the debunking process. There are some people I had come to know on this forum who have suffered facial paralysis because the facial nerve had been accidentally severed during surgery. If you are having surgery, make sure you ask your doctor if they will take any facial nerve precautions.
« Last Edit: September 28, 2024, 02:31:37 am by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.