Possible Perilymph fistula?

[LiliDive]

Hello!

Yesterday I felt numb after reading about Perilymph fistulas I have been having bad symptoms for almost a year now and the doctors have not given me a diagnosis, and then I read about this Fistula and everything seemed to add up. I am hoping that someone has some time to read my story and weigh in on if they think my issues could be a Perilymph fistula. Thank you in advance.

Let's start at the VERY begining (diving comes later!) When I was a kid I had many ear infections, so much so that I became resistant to a common antibiotic they use to treat it (amoxiclav). Luckily I seemed to "grow out of them" and had 12-15 blissful years of no ear infections. Untill April 2017. I got a REALLY bad ear infection, intense pain, eardrum ruptured (go said this), it sucked. From this this event untill December 2018 I had about 13 ear infections. What I would call "dizzy days", and had two vertigo episodes that lasted 2 and 1 day(s).
NOTE on this. Only 5 of these infections were confirmed my a gp, I did not see any docs for the rest of them. Also my ENT questions if any of them were ear infections.

At this point I knew there was something wrong with my ears. But I had always wanted to go diving. I asked 3 different doctors and they had no concerns.... I knew something was going to go wrong but I had been wanting this for long I did not care. I booked my vacation for 2 weeks and scheduled 4 days of diving at the very beginning because I knew that I would at minimum get an infection and I did not want to deal with that on the plane back.

So in December 2018 I go diving. I instantly fell in love with it. But on every descent that I had.... Had pain in both of my ears. They would not equalize, it would take me at least 3 times as long to descend as everyone else. Let's just say that I would not do the Valsalva Maneuver gently. I was "blowing" as hard as I could... I am sure you.are cringing reading that. I knew that it was wrong. But it happened so let's move on.
I get motion sick so every time I surfaced I felt dizzy I figured it was the waves.
Sure enough on the fourth day of diving I could feel that pressure in my ear that indicated to me I was going to get what I considered an ear infection. The next day I could not walk because I was so dizzy and was throwing up. I had to call my mom to come join me in Belize (I am in my 20s and she wanted to come initially anyway, so it's only mildly pitiful).
After 2 days I still had ear pain, could not really hear out of my right ear and mild dizziness, but I was used to this.... So I (with my mom) continued on with my vacation! I got some pain killers and antibiotic ear drops and had a great time. My issues calmed down about a week after I came back, and got all of my hearing back.

Fast forward to March 2019... I can barely function. I am dizzy (not vertigo) (unbalanced feeling) all of the time. Hearing is fine. I am in bed for 18 hours a day, this lasts 3-4 months. In April I see an ENT. Ear drum pressure is fine, hearing is fine, eventually get an MRI and CT everything is fine. He don't know what is going on but gave me Ondansetron so I could at least try and eat things.
Eventually I figure out that certain movements/actions make my symptoms worse (bending, quick movements, grocery shopping, exercise) so I make some pretty intense life style changes. Think of me as an old person who can't really move but does really slow squats to pick things up.
Lo and behold I get relatively better. I am only sleeping 10-12 hours a day, and can do day to day things... albeit in a limited capacity.
I can drive again, which makes me happy because I had to move back in with my parents and they live near nothing.
When I drive up/down my ears pop/get a full feeling, along with the other things I am also sensitive to sound (can't really do movie theaters) I tried walking in heels again... That did not go well...
I got a job where I sit at a desk all day. So I am working again. I still have bad days. And even though I am not at all happy with it. I accepted my new normal.

In April I have an appointment with some neuro vestibular specialist... Where he is gonna do like a full day of tests.

I had stopped going on Google to figure out what was wrong with me cause I kinda have up. But then yesterday I somehow came across the Fistula thing....

Could this be it???

I am not even going to scroll up to see how long my story is cause if I do I will feel bad about someone having to read it and probally delete it all... So really sorry about this. If anyone makes it to the end.... THANK YOU

 

[rsingler]

@doctormike ?

 

[doctormike]

Wow, sorry to hear that you have to go through all of that.

There are so many variables in that story that it's really hard for me to make a helpful guess over the Internet. It sounds like you have had issues with equalizing, so as far as the diving aspect of things go, that's usually a technique issue rather than an anatomic issue, but again, hard to say online. The fact that your hearing is normal is a good sign - patients with fistulae often have some degree of hearing loss as well. And the fact that the CT is normal - while that doesn't rule out a fistula - means that there isn't a major congenital abnormality of the temporal bone. Seeing a vestibular specialist sounds like a good idea.

Good luck, and feel free to keep us posted.

Best,

Mike

 

[LiliDive]

Wow, sorry to hear that you have to go through all of that.

There are so many variables in that story that it's really hard for me to make a helpful guess over the Internet. It sounds like you have had issues with equalizing, so as far as the diving aspect of things go, that's usually a technique issue rather than an anatomic issue, but again, hard to say online. The fact that your hearing is normal is a good sign - patients with fistulae often have some degree of hearing loss as well. And the fact that the CT is normal - while that doesn't rule out a fistula - means that there isn't a major congenital abnormality of the temporal bone. Seeing a vestibular specialist sounds like a good idea.

Good luck, and feel free to keep us posted.

Best,

Mike

Hi Mike,

Thank you so much for the reply!
Can I ask what you mean when you refer to "technique rather than automatic issue"? Like equalization problems are not supposed to be an automatic issue?

Sidenote: as for the hearing thing.... Yeah it seems that almost all vestibular/balance issues have a hearing loss component! I have had so many hearing tests in the past 8 months! I think the doctors want my hearing to go down so they can know how to proceed.

Thank you so much for your time!

Lilia

 

[doctormike]

Hi Mike,

Thank you so much for the reply!
Can I ask what you mean when you refer to "technique rather than automatic issue"? Like equalization problems are not supposed to be an automatic issue?

Anatomic, not "automatic"

That is, most people who have problems equalizing don't have a physical blockage of the Eustachian tube that can be fixed.

Sidenote: as for the hearing thing.... Yeah it seems that almost all vestibular/balance issues have a hearing loss component! I have had so many hearing tests in the past 8 months! I think the doctors want my hearing to go down so they can know how to proceed.

Thank you so much for your time!

Lilia

Sure, sorry I can't be more helpful.

Here is my page about ear issues in scuba diving, for some background...

 

[Duke Dive Medicine]

Hi @LiliDive ,

As I'm sure you've read, the symptoms of perilymph fistula (PFL) can include hearing loss, tinnitus (ringing in the ear or ears), and vertigo. No need to educate you on forceful valsalva, but for posterity, don't do that. If you have to force a Valsalva, you're too congested to dive.

You said that your symptoms resolved about a week after you returned from Belize. Did you get your hearing tested after your incident, and did you have a baseline audiogram before the dive vacation? Hearing loss from true PLF tends to be permanent. Vertigo from PLF can take quite a while to resolve, as the vestibular apparatus from the other ear has to take over from the damaged one and it takes time for that to happen. Your relatively rapid progression back to normal does not seem to fit the normal arc of recovery from PLF.

@doctormike can correct me if I'm wrong, but I don't think PLF symptoms resolve then reappear without some sort of additional insult. What led up to your symptoms in March of 2019? Did you have another ear infection?

I would echo @doctormike , the neurovestibular specialist sounds like a good idea.

I'm linking an article on barotrauma. It has some information on middle ear barotrauma and PLF.

https://www.diveassure.com/wp-conte...s-Eric-Hexdall-RN-CHRN-Duke-Dive-Medicine.pdf

Best regards,
DDM

 

[doctormike]

Hi @LiliDive ,

As I'm sure you've read, the symptoms of perilymph fistula (PFL) can include hearing loss, tinnitus (ringing in the ear or ears), and vertigo. No need to educate you on forceful valsalva, but for posterity, don't do that. If you have to force a Valsalva, you're too congested to dive.

You said that your symptoms resolved about a week after you returned from Belize. Did you get your hearing tested after your incident, and did you have a baseline audiogram before the dive vacation? Hearing loss from true PLF tends to be permanent. Vertigo from PLF can take quite a while to resolve, as the vestibular apparatus from the other ear has to take over from the damaged one and it takes time for that to happen. Your relatively rapid progression back to normal does not seem to fit the normal arc of recovery from PLF.

@doctormike can correct me if I'm wrong, but I don't think PLF symptoms resolve then reappear without some sort of additional insult. What led up to your symptoms in March of 2019? Did you have another ear infection?

Yes, exactly. PLF is somewhat of a controversial diagnosis, even after middle ear exploration. There isn't a good test for it, and the symptoms can fluctuate. But usually it's not such a quick resolution, and vertigo can be caused by a wide range of pathology. And of course, the nature of each "ear infection" can be hard to determine from a history alone...

 

[Angelo Farina]

I am not a MD so I will not talk about medical problems.
But the point of equalizing technique was raised, and here I have something to say.
The use (or abuse) of the Valsalva manoeuvre was probably one the causes of your problems.
Valsalva is easy to teach and to learn, but by far it is NOT the best way of equalizing your ears.
Not only it is only partially effective, but the overpressure inside your lungs can even be dangerous.
There are at least other 4 equalizing methods, each with specific advantages over Valsalva.
I just name them here, I suggest that you make some search on internet for getting proper explanations.
Let's introduce them shortly:
1) Toynbee: close your nose and swallow. This creates depression inside the nasal cavity, opening the tubes. Highly recommended for equalizing during ascent, when needed.
2) Frenzel: used mostly for deep freediving. Close your mouth, close your nose, close the epiglottis (hence excluding your lungs) and push the tongue against the soft palate, squeezing mechanically the air trapped above it, which forces the tubes to open. Very good for fast equalizing during rapid descent, typical of freedivers. The drawback for scuba diving is that you must close the mouth, hence removing the regulator from your lips.
3) Marcante-Odaglia: the same as Frenzel, but practised with the mouth open, so you can make it while keeping the reg in your mouth. In the US most people do not understand the difference between Frenzel and M-O, so they improperly name "Frenzel" also the latter.
4) Using the proper muscles which open the Eustachian tubes. Only 1/4 of the general population has voluntary control on these muscles, but if you learn how to control them, you can equalize without the need of any "manoeuvre". No need to close the nose, nor to interrupt breathing. This is the best, of course, and I am lucky to be able to equalize this way...
There are other variants (for example Frenzel-Fattah, aka Mouth-Fill), but I think that studying the 4 methods described above should be already a good starting point.

 

[LiliDive]

Hi @LiliDive ,

As I'm sure you've read, the symptoms of perilymph fistula (PFL) can include hearing loss, tinnitus (ringing in the ear or ears), and vertigo. No need to educate you on forceful valsalva, but for posterity, don't do that. If you have to force a Valsalva, you're too congested to dive.

You said that your symptoms resolved about a week after you returned from Belize. Did you get your hearing tested after your incident, and did you have a baseline audiogram before the dive vacation? Hearing loss from true PLF tends to be permanent. Vertigo from PLF can take quite a while to resolve, as the vestibular apparatus from the other ear has to take over from the damaged one and it takes time for that to happen. Your relatively rapid progression back to normal does not seem to fit the normal arc of recovery from PLF.

@doctormike can correct me if I'm wrong, but I don't think PLF symptoms resolve then reappear without some sort of additional insult. What led up to your symptoms in March of 2019? Did you have another ear infection?

I would echo @doctormike , the neurovestibular specialist sounds like a good idea.

I'm linking an article on barotrauma. It has some information on middle ear barotrauma and PLF.

https://www.diveassure.com/wp-conte...s-Eric-Hexdall-RN-CHRN-Duke-Dive-Medicine.pdf

Best regards,
DDM

Hello!
Thank you so much for the reply!
I did not have a hearing test done before diving. The first hearing test I had done was in April 2019.
I don't think I had an ear infection right before March 2019 ... But it is quite possible that I had the flu (I vaguely recall this).
I do have occasional tinnitus, but it is not constant.

What I was pondering (me playing doctor to myself is the exact reason I try and stay away from googling my symptoms lol). Was if it was possible that the "round window" did not actually tear during the diving.... Or there was only a partial tear, and then "fully teared" at some later point (March). But that being said there is not a specific "moment" that I can remember that happened I March where I can say this would have happened. (So maybe this "theory" is not so great) It was more of I got sick, and then was dizzy, which at the time I figured was because I was sick, but then the "sick" symptoms went away but I never recovered from the dizziness.

I know that vertigo tends to be used as a general term for dizziness..... But I do feel the need to make clear that I have not had an actual vertigo episode in 2ish years (before diving). The dizziness that I felt after diving and the constant dizziness that started in March is more of an unbalanced feeling. Not so much that the room is moving, but more that I am. On this note... Looking at things that spin, like fans, or standing in one place make me more "dizzy", walking is much easier for me then standing still.

Thanks again!

 

[Duke Dive Medicine]

Hello!
Thank you so much for the reply!
I did not have a hearing test done before diving. The first hearing test I had done was in April 2019.
I don't think I had an ear infection right before March 2019 ... But it is quite possible that I had the flu (I vaguely recall this).
I do have occasional tinnitus, but it is not constant.

What I was pondering (me playing doctor to myself is the exact reason I try and stay away from googling my symptoms lol). Was if it was possible that the "round window" did not actually tear during the diving.... Or there was only a partial tear, and then "fully teared" at some later point (March). But that being said there is not a specific "moment" that I can remember that happened I March where I can say this would have happened. (So maybe this "theory" is not so great) It was more of I got sick, and then was dizzy, which at the time I figured was because I was sick, but then the "sick" symptoms went away but I never recovered from the dizziness.

I know that vertigo tends to be used as a general term for dizziness..... But I do feel the need to make clear that I have not had an actual vertigo episode in 2ish years (before diving). The dizziness that I felt after diving and the constant dizziness that started in March is more of an unbalanced feeling. Not so much that the room is moving, but more that I am. On this note... Looking at things that spin, like fans, or standing in one place make me more "dizzy", walking is much easier for me then standing still.

Thanks again!

There are lots of maybes here. Focusing only on the diving part for a moment: there is such a thing as non-fistulating inner ear barotrauma, which I don't think can be ruled out in your case, but neither can severe middle ear barotrauma, and the event is distant enough that you may not get an exact diagnosis. I think it's unlikely that barotrauma that happened in December of 2018 led to your symptoms in March of 2019, but anything is possible, and given the complexity of your case I would be hesitant to speculate any more.

If you haven't done so already, I'd recommend that you put together a detailed time line of events (ear infections, possible ear infections, scuba diving, etc) and how they correspond to your symptoms worsening and improving. Also include anything that made/makes the symptoms better or worse. That will be helpful for your vestibular neurologist. Also, I would strongly recommend that you not dive until this is resolved and you can equalize your ears easily. You'd be risking serious, possibly permanent injury to your inner ears if you did.

Best regards,
DDM