Gave myself a Perilymphatic Fistula (PLF). I need help

[DaveCouldUseYourHelp]

Hi all,

I'm not a diver but I managed to damage myself by giving myself something similar to barotrauma in my left middle ear.

Backstory:
I inflamed my eustachian tubes and gave myself Tinnitus by doing a sinus wash wrong. The ENT I saw offered no help or explanation (I had to diagnose myself). I found a forum post on tinnitustalk.com that recommended doing a sinus wash with a netipot and adding drops of oregano to it. Then when the water was up your nose to do the valsalva manuever and blow it back into your eustachian tubes to clear it out. DO NOT DO THIS. I couldn't gauge how much water I had up there and overfilled my left middle ear when I blew it back (like overfilling a balloon). I felt a twinge of pain for 3 seconds and then normal again.

The next day my left ear was making a new louder sound than my right ear. Kinda like a tea kettle boiling steam sound in my left ear. In a panic not knowing what I had done, I did the same thing again (trying to wash whatever I had done out). Again I blew too much and felt the same twinge of pain only this time the screaming sound got louder! And then weeks later I did it one final time for good measure...didn't seem to get any worse but that couldn't have helped...

A month later I was explaining to a tester the work I had done so they would know what to test and I felt nauseous and light headed and my left ear was sore. It seemed to be hurt by my talking.

I got my doctor to prescribe me prednisone (cortical steroid) and I took that over a 3 week period. I'm not sure whether my ear got better or whether it was a placebo because I just felt like I was doing something to help it but after I was done with the steroid my left ear felt like it was on the road to recovery and didn't bother me much.

2 weeks later I felt good enough to go to Chili's with no ear plugs in and eat a chicken fajita. After that experience my left ear was screaming (possibly exacerbated by the loud music and the chewing).

It wasn't until last week that I figured out I had the symptoms of a PLF tear. I've felt liquid trickle down in my middle ear but I didn't feel dizzy until after I read about that symptom so I'm not sure if I really get dizzy after physical exertion.

I've taken off of work to try to conservatively heal this but I keep doing stuff to exacerbate it (i.e. talk, chew, look down) and I keep feeling like I just hurt it more.

It's been over 2 months (I did this beginning of August). I'm seeing a Neurotologist on Oct 18th (that was the soonest they could see me). I've read that you want to get a PLF fixed within 47 days and it's been longer.

Oh and the best part, I missed the deadline to sign up for my new job's health insurance so I don't have any to pay for an operation if I need one.

Can anyone give me any advice?

How expensive is it out of pocket?

Someone please help. I can't live with this screaming in my ear!

-David

 

[Duke Dive Medicine]

Wow. Sorry this happened to you, David. Did you go back and post this on that forum? I'm a little taken aback that anyone would advise this.

The fluid you say you felt trickling from your middle ear was probably not perilymph fluid, it was more likely residual fluid that you'd managed to get up there or serous fluid related to inflammation. Still, your symptoms are suggestive of inner ear barotrauma. It's possible that it is/was a non-fistulating barotrauma but the only way to definitively tell is via surgery, and 47 days out I'm not even sure how much surgery will help. @doctormike is a technical diver and pediatric ENT surgeon; maybe he can provide some insights.

If we diagnose a diver with inner ear barotrauma in the acute setting, we order strict bed rest for 24 hours and if the symptoms don't improve during that time we recommend immediate surgery. Unfortunately the fact that your tinnitus has not improved by now is not reassuring. Sorry that the news isn't better.

Best regards,
DDM

 

[DaveCouldUseYourHelp]

So I saw the Neurotologist. He basically said he didn't see anything on the MRI and that if he did surgery he could make it worse. He didn't think it was lymphatic (so maybe a fistula just not a peri-lymphatic one) because I'm not experiencing dizziness with exertion. He seemed to want me to wait and see if it got any better. It's been since August and I don't think it's gotten any quieter.

Anyone have something like this and had the constant high pitched ringing go away or at least die down?

If it stays like this after 6 months I'll take the risk that surgery might make it worse because I'll also have the chance that it will get better.

 

[doctormike]

It's really not possible to give much specific advice over the Internet. If you actually saw a neuro-otologist, I would consider his or her advice as much more helpful and accurate than anything we could give you here...

Did you get an audiogram? This is perhaps the most important piece of information, and I didn't see that in your post. Can you share your the resulst of your hearing tests with us?

A perilymph fistula is a somewhat controversial diagnosis. The only way to really make the diagnosis is at surgery, and even then it's not always an obvious leak. Very little is known about tinnitus, what causes it, what makes it get worse and better, etc... So I'm not sure that your symptoms opint towards one diagnosis or another. Unfortunately, as you probably know, tinnitus is a very frustrating symptom since we don't have a lot to offer for it's sufferers.

I'm sorry that I can't be more helpful, but I don't think that anyone can give you an accurate time course for recovery, etc...

 

[ibj40]

So I saw the Neurotologist. He basically said he didn't see anything on the MRI and that if he did surgery he could make it worse. He didn't think it was lymphatic (so maybe a fistula just not a peri-lymphatic one) because I'm not experiencing dizziness with exertion. He seemed to want me to wait and see if it got any better. It's been since August and I don't think it's gotten any quieter.

Anyone have something like this and had the constant high pitched ringing go away or at least die down?

If it stays like this after 6 months I'll take the risk that surgery might make it worse because I'll also have the chance that it will get better.

As cruel as this may sound, but, join the club.

I lost all hearing in my right ear about 25 years ago, and then 2 or 3 years later, it came back, inexplicably, actually graded out better than my "good" left ear.

Then, about 15 years ago, I began to experience severe tinnitus in my right ear. Initially it was assumed to be caused by my racing cars off and on since the mid 70's, but due to driving left hand drive cars, that activity would have impacted my, now good, left ear.

Two MRI scans and related hearing tests later, there's nothing organic, nothing, nada. So now I just live with it. My accommodation is to always sit to the far right of groups, and to make sure that experts are always to my immediate left.

I wish I could be encouraging, but I will defer to realistic. I am truly sorry that you are experiencing this, but I wouldn't get my hopes up for a surgical solution.

 

[Duke Dive Medicine]

So I saw the Neurotologist. He basically said he didn't see anything on the MRI and that if he did surgery he could make it worse. He didn't think it was lymphatic (so maybe a fistula just not a peri-lymphatic one) because I'm not experiencing dizziness with exertion. He seemed to want me to wait and see if it got any better. It's been since August and I don't think it's gotten any quieter.

Anyone have something like this and had the constant high pitched ringing go away or at least die down?

If it stays like this after 6 months I'll take the risk that surgery might make it worse because I'll also have the chance that it will get better.

Dave,

If surgery is going to help with symptoms of a perilymph fistula (provided one is found, like Mike said), it would be within the first couple of days. Six months out won't do anything for you.

I'd also echo what Jim said. I have tinnitus myself... it can be anywhere from annoying to maddening but you can get used to almost anything given enough time and no other choice. There are some treatments out there but nothing is 100% effective.

Best regards,
DDM

 

[DaveCouldUseYourHelp]

The thing that floors me about this is that when I wake up in the morning it seems relatively quiet, then an hour or so later it picks up to screaming. Chewing, nodding, talking seems to exacerbate it (all of which I can't seem to avoid doing within that first hour).

I have pain/heat going on in there which makes me hopeful that once that goes away this might lessen at least a bit, but I also seem to keep re-opening the wound. And I've had this for 3 months already.

Has anyone also suffered with something like this from barotrauma and recovered? Even just a little bit? It's soo loud like a steaming tea kettle right next to my left ear.

It really seems to me like there has to be something a doctor could do with a little bit of exploratory surgery and I believe the tear is small that some kind of surgical glue could be put in there to clamp it shut.