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Does anyone have a glomus brain tumor (paraganglioma)?

Brain Tumor | Last Active: Apr 17, 2023 | Replies (18)

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@kfs

Yeah I have the one by the jugular and the neurosurgeon sent me to a bunch specialists before I was supposed to have it shrunk by radiation. The cancer institute did an MRI before treatment and said it was too insignificant to shrink so we're watching it..last year it was 1.43 centimeters. Its been a year since that MRI and my neurologist said we will do one if I'm having symptoms which is confusing because she said all my issues aren't related to the tumor itself so they're having me see a different neurologist in January. The only reason we found the tumor was because I get vestibular migraines and we were trying to stop the cycle of getting them for days and days without relief. And around that time I was getting a lot of vertigo to the point of falling over and I had to stop working. They discovered that that's caused by inner ear deficit. Currently for the last 6 weeks I've had various degrees of dizziness and migraines are happening a bit more as well as the pulsing in my ears and having more and more slurred speech and a lot of memory issues and using incorrect words and she said that these things aren't related to the tumor.

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Replies to "Yeah I have the one by the jugular and the neurosurgeon sent me to a bunch..."

You may be interested in this discussion related to dizziness and vestibular migraines:
- Chronic dizziness and vestibular migraines https://connect.mayoclinic.org/discussion/hello-_-my-name-is-kim-i-am-33-years-old-and/

There are also great discussions about many of the symptoms you talk about in the ENT group (https://connect.mayoclinic.org/group/ear-nose-throat-conditions/) and the Hearing Loss group (https://connect.mayoclinic.org/group/hearing-loss/) for example:
- Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/
- Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/
- Propriociption https://connect.mayoclinic.org/discussion/propriociption/

That's great that your neurologist scheduled to a second opinion with another neurologist in January. Did she explain why she feels your symptoms are not related to the tumor? What does she suspect?

I had radiation for this exact timg 1 year ago. All of your symptoms I have exactly as you have.
For the past year I have been noticing more and more that I am having short turm memory problems. They say it isn't related to my tumor or the radiation. My headaches are still rbe same.

I have lost the nerves that control one vocal cord and half my toung is paralyzed as well.

My headaches are excruciating I wish I had better news for you.