Inner Ear / Vestibular Issues?
 

Hi all,

I just met with my ENT specialist today to go over the VNG test (eye goggles that record eye-inner ear-vestibular function). I tested positive for left ear inner ear issues. He is ordering an MRI of the left inner ear for further diagnosis of what is going on.

Of course, I thought I was recovering so I didn't bring my prepared "questions to ask doctor" list. LOL. I decided to wing it, and I forgot to ask so many basic questions.

I will get a copy of the report tomorrow, but I was wondering if any of you-

-tested positive for inner ear issues?
-have insights into what this means for airplane travel (6 hour flight?)
-are undergoing vestibular therapy for this?
-any other questions I should ask?

At 10 months, I am also undergoing vision therapy/ prism glasses for convergence insufficiency and accommodation issues. The neuro-opthalmologist thinks I have another 9-12 months to go.

Any advice on what the timeframe for inner ear issues is? I can't tell if I am relieved that there is something tangible or if I am depressed that this is going to be a long road. Shock perhaps.

Thanks you all!

Yes! Inner ear damage. Labyrinthian concussion, BPPV, etc...the good news is that the right vestibular therapy can help a lot. It is slow, as in all of this neurological healing....but it is possible to make great strides. My vestibular therapist and the professors she works with are very confident.
Also, the vision, inner ear, etc. are all very intertwined. I have been told it is all related to brain stem damage, cranialnerves coming out of that area, and the brain itself.

It is slow to recover, unfortunately. But we are the lucky ones, since it could have been much worse.

Hope this helps. It is slow but hopefully you will heal!!!!

Thanks for the reply! I am re-reading your symptoms, Mokey, and we sound very similar.

Would an MRI show this brain stem or cranial nerve damage? Or is it to see the labyrinth concussion?

I'm guessing that when you reference slow to heal, it is a 3-5 year timeframe of slow, gradual healing?

And yes-I'm vacillating between feeling sorry for myself and then feeling incredibly lucky that it wasn't worse....

I Can Relate
 

-tested positive for inner ear issues?
-have insights into what this means for airplane travel (6 hour flight?)
-are undergoing vestibular therapy for this?
-any other questions I should ask?


I have BPPV but not vision problems that I needed prisms.I would not recommend travel and have a happy trip.Or you could try to travel and get acupuncture as soon as you get to destination would help motion sickness.I would ask if there is a medication best for motion sickness.I went to the Caribbean at 9month's and was manageable because I got a massage every other day and did nothing but sit on the beach.The trip back was the WORST I thought I had malaria lol!But it depends direction of flight, time change etc.

Like Mokey said it is very beneficial to get a therapist that is certified in vestibular therapy or else one without could mess you up!I been there but now have a TBI vestibular specialist.

The time varies in each person there is not a one size fits all.Wish you the best and hope you find a good therapist that is certified to put on your team.
:hug:

Re MRI showing these things....I am not an expert. My brain MRI did not show anything in that area. Apparently most don't. I am curious about a distinct MRI for the inner ear. I would have thought a brain MRI picks up those things? Maybe not. I have a neck MRI tomorrow (finally). Looking for the neck problems as I have limited mobility (getting better with therapies).

My neuro-opthamologist (sent from heaven!!) told me last week that I will continue to improve and this type of injury (brain stem, auditory and vision problems) can take a good 3 - 5 years. But I took that as good news as it gives us hope and a timeframe of sorts.
She herself had almost died from a massive brain hemorage (spellng!) a few years ago, was paralyzed, could not speak, etc. So she certainly is a living example of how the brain can heal! Hang in there!

Thanks for the tips. I'm trying to stay positive (it could have been worse!) but I'm slowing realizing the enormity of the rehab involved.

I got a copy of the report which states that there is "significant peripheral (possible lesion in semicircular canal) and central vestibular dysfunction".

They want an MRI of the posterior fossa / internal auditory canals for the central vesitbular issues.

The timeframes are helpful. My neurologist kept thinking I would be better at 3, 6, and 9 months, but he was always supportive when I didn't "recover".

It helps knowing that the horizon of recovery is out there--it just may be a little further out than "normal".

Big hugs to you all-this forum is such a comfort.

Looks like my vestibular recovery is going to total about 6month's.Yesterday me and my V talked about she will probably be discharging me in July.So it can happen all you got to do is do your exercises at home everyday.You will do great!:hug:

I just met with my ENT to review the inner ear MRI which came back negative or clear.

His overall message was that it could be post traumatic vertigo, atypical Meniere's or migraine associated vertigo. But no specific diagnosis.

He doesn't recommend further tests to pinpoint the causes of central and peripheral vestibular dysfunction because the treatment (vestibular therapy) is all that they can offer.

He also said the timeframe is unknown.

I suppose this is true. Part of me wants a more specific diagnosis of my persistent vertigo/nausea/ear tinnitis and fullness, but my question to the group is it possible?

The category of perilymphatic fistulae or anterior semicircular canal dehiscence or Meniere's is one of ruling out others -- so maybe my need for specificity is not going to truly help.

There is a dizziness/balance clinic at UCSF - has anyone been?

This pcs/mtbi is so frustrating! How can it be so dehabilitating and so invisible to MRIs!

This may seem like an odd question but do you use a cpap by chance? I received the same diag and then the same generic diag a couple of years ago. Turns out the cpap was making it worse. I can no longer use my machine but meds keep my world right side up

I saw an ENT this week who is sending me for tests...one of which involved freezing the eyeball?! I forgot (of course) the names of the tests but hope to have the list sometime next week. I will try to remember to post them!

I am interested in learning as much as possible about exactly what was injured...even though it may not change the outcome. But it may, if there are more targetted therapies possible. Knowledge is power.

Most doctors do not have a detailed knowlege of how extensive this injury can be. It takes a lot of work to get to the bottom of things!