[ilikepolkadots]

Hi my PCS and TBI friends!

Great news to share especially for all those suffering with vertigo, vision problems and tinnitus.

I saw an ENT after a referral from my OT and he ended up performing surgery suspecting a CSF or perilymph leak. Indeed he not only found the leak, but found also that my Stapes bone (smallest bone in the body that is crucial to sound and stability along with nystagmus) was fractured and dislodged causing the Incus bone to fall on top of it. This all happened 3 years ago when I was initially hit he believes.

He fixed it! And the nystagmus disappeared almost immediately and the tinnitus has been decreasing yay! So for anyone who is suffering- it may be a good question to ask your ENT to test for it. They blow air into the affected eat and see if you get nauseas or have nystagmus occur.

One thing I've found since the surgery though, is my facial nerve must have been inflamed causing slight paralysis on my left side that I continually complained about to doctors to no avail. But now... I am having immense pain on both sides of my face, when I close my eyes my chin dimples in and hurts and when I smile my right eye squints with pain.

I was having right sides pain above my eye and under my eye, as well as into my nose for the last 3 years and now it is on crack! So painful! Like my nerves are rewiring and my muscles are twitching constantly.

Has anyone dealt with synkinesis before or have any suggestions?

I'm so happy to have found a solution for most of my discomfort over theast 3 years!!! ...but now discouraged to have all this pain! Ugggh

I keep telling myself, this too shall pass and am reading 'The Brain that changes itself' to keep my spirits up!

[RidingRollerCoaster]

Thanks for the info. I'm glad you found something to help you but hope the pain dissipates.

What is CSF?

Take care.

[RidingRollerCoaster]

Hi Again

I just saw an ENT too and asked him about a perilymph fistula (is that the same as a perilymph leak?). He ruled it out for me because he said if I had one, I would have true vertigo instead of the general dizziness/giddiness and I would have a more hearing loss at lower frequencies (my hearing loss is very slight and at very high frequency).

So I'm just curious if you have true vertigo (room spinning) and significant hearing loss, and that is what helped lead to the diagnosis? I just want to make sure I can definitely rule this out since I am over a year into this and still dizzy.

He said I probably have what he called a vestibular concussion, which takes a very long time to heal.

Thanks for your help.

[ilikepolkadots]

Originally Posted by RidingRollerCoaster

Hi Again

I just saw an ENT too and asked him about a perilymph fistula (is that the same as a perilymph leak?). He ruled it out for me because he said if I had one, I would have true vertigo instead of the general dizziness/giddiness and I would have a more hearing loss at lower frequencies (my hearing loss is very slight and at very high frequency).

So I'm just curious if you have true vertigo (room spinning) and significant hearing loss, and that is what helped lead to the diagnosis? I just want to make sure I can definitely rule this out since I am over a year into this and still dizzy.

He said I probably have what he called a vestibular concussion, which takes a very long time to heal.

Thanks for your help.

I didn't have 'true vertigo' nor did I show hearing loss during the hearing test. My hearing would just suddenly go muffled and I had dizzy spells but more like a drunken feeling, never a spinning room. I learned to compensate as in re beginning I would run into walls and eventually my body adjusted to a sideways life! I would ask him to do the air test where he blows a puff of air in each of your ears and see if in increases your symptoms. If it doesn't then you can put it behind you.

CSF is a cerebrospinal fluid leak and is similar to a perilymph leak but a different fluid.

I'm sorry for your troubles and should let you knew I sought out many a second opinion until I finally found someone who would solve the problem. I've noticed when you say TBI or concussion, many doctors stop there as just think what you have is a brain problem and atop ruling out any physical symptoms. It's a shame as I could have been fixed 3 years earlier when I saw and ENT originally! He just looked at my sinuses and shrugged.

Keep at it, sorry your in discomfort. What are your symptoms like and can you work?

[RidingRollerCoaster]

Thank you for the info., although I must admit it is not what I wanted to hear I guess I might have to get another opinion. I wonder why he didn't do the blowing in my ear test?

My dizziness is a general off-balance, "whirling" type of feeling that is somewhat always there. It varies in intensity level and gets worse with more activity, busy environments, loud environments, and exercise. I also have the nystagmus.

I am not working right now. I tried to struggle through working for several months, but realized it was keeping me from getting better. After a few hours of working I would start to get really dizzy and exhausted and then was out for the rest of the day.

I found a really good vestibular therapist, and she is helping me to better understand how to manage the dizziness. I have improved, but I still am not really where I would like to be because exercise used to be a big part of my life, and I can't do much of that right now.

I just can't help but think that there is something physically wrong with my ears because of the hearing loss, tinnitus, pressure and pain.

Have you been able to work during all of this? Did you find other therapies that helped you? I'm sorry you had to suffer through for so long. Hopefully you are on the upswing now.
Take care.