Perilymph Fistula—Suggestions for Recovery

[Lauren Morse]

Well, after having so many episodes of migraines, ear pain, T, hearing loss, vertigo/dizziness, and ear fullness from any kind of pressure changes (middle and external ear), loud noises, and bending over or straining or shaking my head or exertion, I do believe I may indeed have either hydrops or bilateral fistulae that I keep reopening by accident.

I am scheduled to see a specialist for fistulas in Portland at the end of July, hopefully to get a real diagnosis this time (unlike the previous specialist who dismissed everything as psychosomatic or anxiety based). The only concern I have is that the appointment is 2 months away, and I am losing some of my hearing every day from seemingly harmless loud noise/pressure/exertion causes. I have another hearing test tomorrow to understand the rate of loss I am experiencing, but I am still extremely concerned.

Has anyone on here experienced a window fistula and know the best restrictions to allow these kind of injuries to heal on their own? I would rather not go the nuclear option of restrictions (the bed rest type) and still be reasonably functional, but I would do whatever it takes to get this under control.

 

[undecided]

Go see an ENT privately and get a referral for a head CT scan.
The best fistula specialist on Portland can't see inside your brain, so waiting for 2 months is a bit useless.

 

[HomeSpun]

Hi Lauren!

I had some head trauma a few months ago and had many symptoms that correlated with vertigo, hearing loss, MIGRAINES, dizziness, etc. I have a workers comp case and my case manager suggested that I see a doctor when my symptoms were worsening. I went directly to an ENT with a specialty in PLFs. He saw me, asked me a few questions, examined my eyes while I went from laying to sitting (and the reverse), then said that he needed more tests to be sure that a PLF was causing my symptoms. I had a 3 hour "hearing" test. When the results were sent to the same ENT, I saw him once more. He basically said three parts of the testing reaffirmed (to him) that I had a PLF and that he HIGHLY recommended the repair surgery. I had the surgery two weeks ago. It's a pretty long recovery but I feel that it is better to have forward action versus waiting...

I would suggest that you see a credible ENT to get the ball rolling...the issue with that is the wait time, which you are already experiencing. I say keep your 2 month appointment and see if you can get in anywhere else in the meantime!

Best of luck! Let me know if you have other questions!

 

[Lauren Morse]

@HomeSpun,

Thank you so much for this information.

I am definitely keeping the July appointment. Unfortunately, all of my other appts. at this point were cancelled by my parents, and while there are neuro-otologists where I live, they may not even know what a PLF is (not the best doctors). I keep trying to call the doctor in Portland to review my symptoms and make preliminary suggestions, but they keep putting me off although they promised they would get back to me.

Did you also have progressive hearing loss, and what kind of tests did you receive? I already had my ABR done, all the balance tests, and OAE's done. All normal, but I don't know what standard they were comparing me too (probably not young people standard), and my vertigo is transient and did not occur during the tests I took. I've also lost a lot more hearing since then. The only test I have never taken was the ECOG test, and that was because it was dangerously loud for me and would have surely damaged my ears.