General Category > AN Issues

Hi I'm new here

(1/1)

manybikes:
I have bilateral vestibular dysfunction.
The cause is unknown. About two years ago my inner ear balance functions started to weaken and last June totally cratered.
Not a fun time.
I have fought the balance problems every inch of the way.
I see that others here are also bilateral. So hard to find anyone else with total bilateral loss.
I am very fortunate in that I am back to driving a car, can walk in crowded places and I even take my motorcycle for the odd ride on the good days.
None of this has come easy.
I am still plagued by oscillopsia. Has anyone else had this and does it ever diminish somewhat?
I am starting to get the odd day where it almost disappears then suddenly strikes back with a vengence.
Looking for any kind of advice from someone who has lost both sides.

Joef:
Loss of both sides would be a tuff one... I can only suggest that you work on the "other" things that you need for balance... eyes... make sure you are up to date on glasses (I'm sure you have noticed that walking a night is harder!).... and joints/muscles .. I would have a workout plan to keep up you strength! ... treadmill , leg crunches, and walking etc... talk to your Dr. about it....

Sam Rush:
How old are you? Do you smoke? Sounds like you could have had a cerebellar CVA. Have you had a MRI?

FlyersFan68:
Hello Manybikes,
   Most of us here adapt to unilateral vestibular dysfunctin some being partial others being completely. You may get better advice posting your question in our NF2 section here on ANA since NF2 patients sometimes experience bilateral dysfunction. I have some knowledge about this subject but only through my own private research and only pertaining too loss on one side versus two sides struggling. It's a shame they haven't found the cause yet and was also wondering if an MRI was ordered. Here are some links that might help some. There is one more that's really informative and I am trying to locate.


http://www.vestibular.org/vestibular-disorders/causes-of-dizziness/dizziness-caused-by-vestibular-disorders.php


http://www.menieresinfo.com/diagnosis.html


http://www2.kumc.edu/otolaryngology/otology/VRforMDs.htm

manybikes:
Thanks to all for the reply's.
I did  have an MRI which showed nothing abnormal. I am going in next week for another one.
I have done some research and found that there is a certain percentage of cases they say are "Idiopathic" meaning
no known cause.
I still suspect that there was a cause but at this time just has not been detected.
Losing both sides is tough, so few people have. The one person I have had contact with lost both sides about
six months ago due to Gentamicin and she is suffering horribly.
I feel lucky that mine went somewhat slowly which allowed some time for my brain to re-adjust.

Navigation

[0] Message Index