Author Topic: Another MN newbie - balance issues anyone?  (Read 2259 times)

bfoley

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Another MN newbie - balance issues anyone?
« on: April 23, 2019, 05:45:09 pm »
Hi - Where do I begin?  I was diagnosed in February 2019, had my first and second consultations in April.  I am told all 3 options are open to me.  From diagnosis until a week after the first consult, W & W seemed like the way to go.  I came down with a nasty cold/flu before the second.  I experienced vertigo for the first time in my life.  I lost all the hearing in my affected ear.  Now that the bug is gone, I am left with no useable hearing in my affected ear and huge balance issues.  I can handle no hearing in that ear, but I refuse to be sidelined by vestibular issues.  I need to kick this to the curb.  I am looking for any advice from you wise folks! Went out today and bought ginger chews and ginger tea (I heard it can help with balance) and found some PT exercises on youtube.  I plan on starting real physical therapy soon, and am seriously considering Gamma Knife at the Mayo.  I figured that if it stops growing I can hopefully get my balance caught up to where it can be stable.  I am pretty active, not running marathons, but usually put 10,000 steps a day on my Fitbit.  Thanks in advance for the wise words!!

chrisabbott

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Re: Another MN newbie - balance issues anyone?
« Reply #1 on: April 23, 2019, 09:36:51 pm »
Hi - I was only diagnosed in March, and have limited options.  I have no earthly idea when my hearing started to go, largely because I already had sucky hearing due to measles when I was a baby.  I just noticed weird stuff that indicates that last shreds of hearing in my left ear have gone or are on their way out & it's pretty bizarre.  (Mild, swallow-it burps produced brief tinnitus in both ears starting a couple years ago, now I only hear it in my non-AN side) I believe we are both in the research the begeezes out of this so it seems like we should know more, yet there's so much we don't know situation.

I don't know about balance, but ginger is good for nausea - if balance issues also produce motion sickness for you then ginger should help with some of the unpleasant symptoms.
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

CoopCrafts

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Re: Another MN newbie - balance issues anyone?
« Reply #2 on: November 16, 2020, 10:57:04 am »
Hi, bfoley.  I'm a Newbie myself, also with balance and vertigo issues.  I was recently put on a course of steroids and it was a great help.  No vertigo, my balance is not perfect but greatly improved, and I think the hearing in my AN ear is also better.  It's temporary but no less welcome for it.
Tiny 3mmx2mm Found 10/23/20
Dizziness, Wonkyhead, Vertigo,
Slight Hearing Loss, Tinnitus on Left
Future Mid-Fossa Before It Grows

bfoley

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Re: Another MN newbie - balance issues anyone?
« Reply #3 on: November 17, 2020, 06:04:23 am »
Welcome to the club CoopCrafts!

I had Gamma knife at Mayo (Rochester) in July 2019.  One year checkup there shows slight shrinkage!  Yay!  That being said, I still have balance issues daily.  Loud tinnitus.  I remain active, with the pandemic I dont get in quite as many steps as I did when I had to walk to work from the bus stop (its not very far from my bedroom to the new WFH desk), but average 9,000 a day still.  I must keep wide paths for walking as every once in a while I unexpectedly swerve!  I find that a coQ-10 daily helps with the loudness in my ear.  I take ginger capsules daily for the slight nausea I have from balance issues.  If anyone finds anything else that is helpful, please let me know!  Does anyone have any visual exercises (other than fixing on a distant object and moving head back and forth trying to keep in focus?)  I want to keep trying things to get better.   If I am at maximum improvement, its OK - but I would really like to be even better.  Next summer I want to be able to bike?  If thats even possible?