Author Topic: Looking for support for my dizzy (and desperate) mother-in-law  (Read 491 times)

sachah

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Looking for support for my dizzy (and desperate) mother-in-law
« on: February 06, 2024, 12:13:05 pm »
Hello,

I'm writing on behalf of my mother-in-law who is 84 years old and has very bad and deteriorating dizziness.

She had gamma knife radiation for an AN about 10 years ago. Ever since she's felt her stability declining, and now her vertigo is so bad, she spends all day in bed. She has tried vestibular therapy and has seen every neurologist and specialist in NYC she can find. Nothing seems to work and most doctors don't seem to understand the life-changing impact of chronic and severe dizziness.

I'm not even sure what to ask, other than if anyone else has had this experience and was there anything you did that helped? She is desperate and feeling hopeless.

I appreciate any advice or suggestions!

donjehle

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Re: Looking for support for my dizzy (and desperate) mother-in-law
« Reply #1 on: February 17, 2024, 04:27:51 pm »
Hi sachah, and thanks for posting on the ANA Forums!

I am not sure what to tell you about your mother-in-law.  For me, receiving vestibular therapy helped me greatly, and my vestibular therapist ran various tests which showed my progress from falling five times in my first visit and scoring a 34 on balance testing to eventually scoring an 89 (which is better than most non-AN patients my age).

So, my questions would be:  what did her vestibular therapist say regarding her lack of progress?  Did the neurologists and specialists give any reasons why her dizziness was becoming worse and worse (other than age)?  It's interesting that her stability has been declining ever since her GK treatment 10 years ago.  Typically, the GK treatment would kill the tumor, and while there may be initial balance issues, especially as the acoustic neuroma swells from the radiation, but over time, the patient's balance should improve, not get worse.  Of course, everyone's situation is different, but this is a puzzle to me.

Has she had an MRI recently?  Was her GK treatment successful?  I guess I have a lot more questions than I do solutions.

I wish her the best as she deals with a very disturbing condition.  Some of us know how disabling dizziness can be.
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

UkulelesAreAwesome

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Re: Looking for support for my dizzy (and desperate) mother-in-law
« Reply #2 on: March 09, 2024, 05:35:36 pm »
I had gamma knife in August 2022. I had vestibular rehab which was somewhat helpful. I've found Dramamine is very helpful for me.  It eases the dizziness and nausea. I don't take it daily but it has been extremely helpful. Sleeping with more pillows to keep my head elevated also helps.

UkulelesAreAwesome

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Re: Looking for support for my dizzy (and desperate) mother-in-law
« Reply #3 on: March 09, 2024, 05:38:41 pm »
I forgot to add that I've found it helpful also to use an ice pack on my head. Somehow it helps.