Perilymph Fistula - seeking info, symptoms, diagnosis, treatment, etc

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Wow, what a great resource. I am not a diver but am very happy to find this. I have been diagnosed Meniere's disease, but recently have some suspicion that it may be Perilymph Fistula...and you guys seem like the experts on this!!

Allow me to describe what happened. Prior to onset of symptoms I NEVER had any ear problems. So, I was traveling in Asia on Xmas vacation late December 2013 and developed some eustachian tube blockage in right ear, probably from a combination of cold+allergies+lot of smoking (normally don't smoke much). At the time I didn't know what it was but had a bit of tinnitus and muffled hearing. Didn't think too much of it. After the flight back to California, I was ok until I got home and went to bed. Then all of a sudden shrieking tinnitus in the ear with crazy spinning vertigo woke me up. The next 3 weeks were bad, low-tones hearing loss, tinnitus, couple of vertigo attacks with dizziness in between, ear fullness/pressure, general fatigue. Diagnosed Meniere's. Did a course of steroids. The next 6 weeks were a bit better, hearing got better with no vertigo, just a bit of dizziness & tinnitus. I went to the gym during that time and had no issues.

I was told Meniere's has nothing to do with air pressure, cleared to fly, so I went on a flight, for only 2 days, after the flight back realized my eustachian tube cannot pop properly. good ear popped like normal in a couple minutes, bad ear keeps making popping sounds for several hours but did not clear. I finally realized it was eustachian tube dysfunction (ETD), and that I had it blocked the entire prior 10 weeks!! Tried valsalva maneuver several times over the next couple days, good ear has air flow but bad ear completely blocked. One time air actually seemed like it went through the bad ear and made me very dizzy for a few seconds so I stopped valsalva altogether. Over the next 2 weeks tinnitus got worse, and had another vertigo attack, back with the low-tones hearing loss. Tried to work out and lifting made me dizzy.

I then took 5 days of sudafed and things improved a good amount. Hearing came back, tinnitus reduced. Not sure if sudafed worked or just general fluctuation. I went off sudafed and symptoms got a bit worse the last couple of days. I might go back on sudafed.

I am suspecting perilymph fistula (PLF) because:

1) Flying seems to cause problems for me, maybe even started the whole thing. I heard flying with ETD can cause it.
2) Valsalva seems to make me dizzy, when it does go through the eustachian tube.
3) Lifting weights made me dizzy sometimes (although not all the time, which is weird).
4) Eustachian tube obviously blocked or partially blocked the entire time, which has more to do with PLF than Meniere's.
5) Eating salt, which is supposed to make Meniere's worse, has no effect on me.
6) Every once in a while, I almost feel like there's a tiny bit of fluid in my ear. Doc said no fluid, so I might be imagining things.
7) Seems like the sleeping or horizontal position is affecting me (my worst vertigo attacks were always when sleeping or just waking up), which usually means air pressure I heard.


My questions:

1) What are symptoms of PLF? What's the initial onset, and how does it fluctuate as time goes on by weeks or months?
2) How can you diagnose it without exploratory surgery, especially to distinguish vs. Meniere's?
3) Can you fly with PLF, will air pressure make it permanently worse, ie make the tear bigger?
4) Can it fully heal by itself, ie can you make a full recovery? Have you heard of such cases?
5) For those of you with PLF, do you usually have permanent issues and symptoms? What's the prognosis of this long term?
6) Is surgery very risky? I heard you are not supposed to move for weeks afterwards? And I heard the surgery does absolutely nothing for hearing loss and tinnitus, only helps vertigo?
7) Can you work out? Lift weights?
8) Do you usually have worst symptoms after waking up / in the morning?

Thanks so much!
 
My questions:

1) What are symptoms of PLF? What's the initial onset, and how does it fluctuate as time goes on by weeks or months?
2) How can you diagnose it without exploratory surgery, especially to distinguish vs. Meniere's?
3) Can you fly with PLF, will air pressure make it permanently worse, ie make the tear bigger?
4) Can it fully heal by itself, ie can you make a full recovery? Have you heard of such cases?
5) For those of you with PLF, do you usually have permanent issues and symptoms? What's the prognosis of this long term?
6) Is surgery very risky? I heard you are not supposed to move for weeks afterwards? And I heard the surgery does absolutely nothing for hearing loss and tinnitus, only helps vertigo?
7) Can you work out? Lift weights?
8) Do you usually have worst symptoms after waking up / in the morning?

Thanks so much!

Thanks for writing. We really only discuss medical topics that relate to diving on this board, but I can make a few comments.

As you might find out from online research and perhaps from the other threads that DocVikingo posted, a spontaneous perilymph fistula (SPLF) is a leakage of inner ear fluids without any barotrauma (from diving) or severe external trauma (e.g. from an assault or a motor vehicle accident with a skull base fracture). It is a controversial diagnosis, and some otologists (ear specialists) do not feel that it actually exists.

1) For some background information, here is a page with a video featuring a friend of mine and an expert in the field, Dr. Wackym.

2) You can't diagnosis it without exploratory surgery

3-8) If you let me know where you are writing from, I may be able to give you the name of an otologist in your area who can examine you, perform any appropriate tests, and give you specific information about your individual case which may help you make a decision regarding further treatment.
 
Thanks for writing. We really only discuss medical topics that relate to diving on this board, but I can make a few comments.

As you might find out from online research and perhaps from the other threads that DocVikingo posted, a spontaneous perilymph fistula (SPLF) is a leakage of inner ear fluids without any barotrauma (from diving) or severe external trauma (e.g. from an assault or a motor vehicle accident with a skull base fracture). It is a controversial diagnosis, and some otologists (ear specialists) do not feel that it actually exists.

1) For some background information, here is a page with a video featuring a friend of mine and an expert in the field, Dr. Wackym.

2) You can't diagnosis it without exploratory surgery

3-8) If you let me know where you are writing from, I may be able to give you the name of an otologist in your area who can examine you, perform any appropriate tests, and give you specific information about your individual case which may help you make a decision regarding further treatment.


Thanks, appreciate your help. I understand this is a divers board...there are very few good forums out there and you guys seem like you really know your stuff. Sorry for taking up too much of your time.

Do you think flying with ETD will not cause trauma-related fistula? (vs. say spontaneous fistula)

Anyway, I live in San Francisco, am seeing a neurotologist at UCSF. She said that a fistula is almost impossible in my case because the vertigo should hit during/right after the trauma. Whereas my vertigo attacks occur the next day after sleep. Personally I feel like the horizontal position has something to do with air pressure but I can be wrong.
 
Thanks, appreciate your help. I understand this is a divers board...there are very few good forums out there and you guys seem like you really know your stuff. Sorry for taking up too much of your time.

Do you think flying with ETD will not cause trauma-related fistula? (vs. say spontaneous fistula)

Anyway, I live in San Francisco, am seeing a neurotologist at UCSF. She said that a fistula is almost impossible in my case because the vertigo should hit during/right after the trauma. Whereas my vertigo attacks occur the next day after sleep. Personally I feel like the horizontal position has something to do with air pressure but I can be wrong.


No problem as far as time goes, we spend a lot of time on this board as it is! :)

Can't really tell you anything specific over the Internet without a chance to examine you, but if you are under the care of a neurotologist, you are likely in good hands.

As I mentioned, even the existence of a spontaneous PLF is questionable, so it's hard to say much about what is or is not involved in that condition...

Good luck,

Mike
 
No problem as far as time goes, we spend a lot of time on this board as it is! :)

Can't really tell you anything specific over the Internet without a chance to examine you, but if you are under the care of a neurotologist, you are likely in good hands.

As I mentioned, even the existence of a spontaneous PLF is questionable, so it's hard to say much about what is or is not involved in that condition...

Good luck,

Mike

Cool thanks! I heard flying with ETD can cause trauma-induced fistula though...have you ever heard of anyone who got it that way?

Also, can I fly and lift (work out)? I do get dizzy after those activities. My doc already said yes because she thinks its Menieres.
 
Cool thanks! I heard flying with ETD can cause trauma-induced fistula though...have you ever heard of anyone who got it that way?

Also, can I fly and lift (work out)? I do get dizzy after those activities. My doc already said yes because she thinks its Menieres.


I have not heard of someone with no pre-existing inner ear abnormality or injury developing a traumatic PLF from traveling by commercial airline with ETD.

You would need to ask those other questions of someone who has had the opportunity to examine you in person. Sorry, I hope you understand.
 
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