Perilymph Fistula, balance ear fullness
 

Sorry If I spelled that incorrectly

I was just wondering if anyone had any issues with ear fullness popping, and balance, It is a reach but depending on head position, work out, spinning, I will get fullness in my ears, My balance is also off along with other things. I am just putting this out tehre to see if anyone had any experience with such a thing. I am really reaching out here, but you never know!

Read it online while researching. Sounds a little like what I got going on on that side of things, minus the throwing up now thank god..

Thanks again!!

I saw a neurotologist (not to be confused with the recent SNL skit :winky:) a year and a half ago. He said it was possible that a perilymph fistula could explain some of my symptoms. Some of his peers disagree with him regarding perilymph fistulas, I guess it's a controversial area. For me the most likely root of the problem is the central nervous system.

Apparently they can only be diagnosed via CT-scan. Since I first met with him most of my symptoms have improved to some degree. However, oddly enough, I started to experience the fullness of the ears sensation more regularly a year after I met with him. This sensation isn't as common anymore, but I do experience it several times a week.

I am actually heading in for perilymph fistula surgery on Wednesday. I've had ringing in my ear, atypical facial pain, nystagmus, double vision, balance issues, wavy vision with loud noises, etc.

I was referred to an ENT after vestibular therapy showed I definitely was dizzy (more like drunk feeling) blonde. He did some tests and believes it to be a fistula. He also mentioned the fullness gets worse then should get better and that he had a patient with nystagmus get my relief and had no more wavy vision after the surgery!

Oh I'm nervous but my fingers are crossed!!

I'll let you know but I would absolutely go see an ENT=}

Thank you. What do you mean by "after vestibular therapy showed I definitely was dizzy (more like drunk feeling) blonde."? Why did you have to go to vestibular therapy to show that you are dizzy? I was referred to vestibular therapy because I am dizzy all the time (not spinning, but off balance and wonky and weird vision).

How did the ENT figure out it is a fistula? Please keep us posted and let us know how it turns out and what it helps with.

Best of luck to you. Thanks for posting.

[QUOTE=RidingRollerCoaster;1135483]Thank you. What do you mean by "after vestibular therapy showed I definitely was dizzy (more like drunk feeling) blonde."? Why did you have to go to vestibular therapy to show that you are dizzy? I was referred to vestibular therapy because I am dizzy all the time (not spinning, but off balance and wonky and weird vision).

How did the ENT figure out it is a fistula? Please keep us posted and let us know how it turns out and what it helps with.

Sorry it's taken me so long to respond. To answer your questions:
During vestibular therapy, they put you in a sensitive machine and attach a harness to you. The machine has sensors that your feet stand on and give feedback to the computer about where your center of gravity is. Then the machine makes the floor move and the walls move and tests how you balance yourself and can then give readings to determine whether you are dealing with a vestibular issue or visual issue or proprioception issue. It's a really interesting machine.

I, like you, felt dizzy all the time, like everything was in constant motion and that my eyes were trying to adjust constantly to the my surroundings. My vestibular therapist thought my ear should be looked at as a possibility for my unsteadiness.

I got a doctor who was amazing, but I was also quite anxious and at first he thought I just had pcs. Then he tested my left ear with a burst of air and my vision darted and I got nauseas.

That's when he diagnosed it as a fistula and I underwent surgery. He repaired a broken Stapes bone that must've broken in my initial accident and reorganized the bones in my inner ear. He also used a skin graft that he took from around my hair line to use as a bandaid to repair the leak. I noticed significant improvement!

My tinnitus lessened, the nystagmus almost completely disappeared, my balance returned and my ability to just be in my environment returned. Unbelievable! Essentially my life returned! He gave me the environment where I could now officially begin healing.

I still experience some vision problems and have to address those but as far as unsteadiness and dizziness- they are gone! Some days they will return momentarily, and he mentioned it would take time, but for the most part the fistula was the cause of a myriad of my symptoms.

Having that fixed had freed me to focus on my life and healing other parts that linger from the PCS like anxiety.

I feel very lucky and hope you can get some good news with your dizziness.

[QUOTE=ilikepolkadots;1155771]Hey I was wondering if you could share the name of the doctor you visited that performed the burst of air test/surgery itself for the perilymph fistula. I am so disappointed in the quality of doctors I have seen and their lack of openness to my input. I have an undiagnosed/misdiagnosed ear ailment. Your description of everything being in constant motion with your eyes "trying" to adjust is so relatable to me.

Hi thought I might have a PLF for a while now I am not so sure. It could be a Semicircular Canal Dehiscence or more likely some serious issue with one of the vestibular nerves .

Fullness in ears
 

I get fullness in my ears and sort of echoing which impacts, but kinda link it to weather - this taking me 18 months or so to figure out.

Ear specialist, after ruling out physical problems as good as told me it was imagination and this on day of consultation when symptoms were bad. I could so easily have put myself under the bus going by as I walked out of this ignorant, arrogant man's rooms.

Neuro physio had no hesitation in telling me my symptoms are due to atmospheric pressure, this being quite common for folk after brain injury.
Suggested holding my nose and gently blowing to make my ears pop, or use an inhaler.

Aeroplanes are bad and have found that by wearing earplugs and sniffing on hanky with eucalyptus oil or inhaling those nose stick gizmo's (don't know what you call them) it helps.

Best of, and if anyone else has found something helpful please share.