Perilymph Fistula

[Telis]

"A perilymph fistula (PLF) is an abnormal connection (a tear or defect) in one or both of the small, thin membranes (the oval window and the round window) that separate the air filled middle ear and the fluid filled perilymphatic space of the inner ear. This small opening allows perilymph (fluid) to leak into the middle ear.

Changes in air pressure that occur in the middle ear (for example, when your ears "pop" in an airplane) normally do not affect your inner ear. However, when a fistula is present, changes in middle ear pressure will directly affect the inner ear, stimulating the balance and/or hearing structures within and causing PLF symptoms."​

Anyone have this? Any input would be much appreciated. Thanks.

 

[Blujay]

A lot of people likely have these symptoms but don't realize it may be a perilymph fistula.

 

[Blujay]

Can you describe the nature of your tinnitus?

Do you have any lower pitches, humming, beeping, roaring?

 

[Telis]

Can you describe the nature of your tinnitus?

Do you have any lower pitches, humming, beeping, roaring?

My ears roar at times, mainly with pressure change, but even just bending over. I have a beeping in my right ear (sounds exactly like a mix of various different car horns). I have a few standard type high pitched solid loud tones, not sure what frequency but guessing around 10-12khz plus some powerful hissing at a higher pitch that moves in and out of my ears and around my head. This sounds and feels like a can of air with the straw being inserted and shot in my ear randomly (but higher pitch), this one actually hurts.

My tinnitus started with barotrauma, I was using the valsalva method obsessively and with as much pressure as I could. I could not get the right side ear to pop very often so used excessive force. I did this up to tinnitus onset, and beyond. I didn't know it could cause damage.

I was experiencing bad bouts of virtigo and extreme unsteadiness at the start, I would fall in the dark at night and my head would spin in bed if I moved it. During the day I managed. Everything was made worse with ear drops (ciprodex) shortly after this, and then other drugs (ADs, benzos etc)

To this day, 2 years later, I'm still light headed all the time and have balance issues at certain times (few times a week). I am and have been a weight lifter for a long time, I notice that lifting weights these days makes my tinnitus and balance issues worse, I also get a extremely full feeling in the ear after, along with pain (like someone is sticking something deep into my ear) plus extreem hyperacussis, like I can hardly speak. I also get these same symptoms if I drive to and through the mountains (pressure change). I'm not convinced that I can fly so have avoided it since onset.

Anyway, if anyone else has this, I am curious as to what I'm supposed to do? Do I bed rest, try and let it heal on its own? Do I look into getting surgery to repair the tear in the membrane? Do I sit around for the rest of my life afraid to even sneeze and make it worse?

My symptoms seem to improve about 15-20 percent of i do nothing at all, just sit around. No damn clue here. Hoping someone else has a similar experience and can give me some direction. I guess I'm going to start with trying to get into see an ent(again) but that will be months wait here in Canada.

 

[Blujay]

Telis:

Your symptoms do sound like most everything I've read about perilymph fistula.

I'm not knowledgeable about experts in this field, but you'd definitely want an expert.

I understand that some people heal on their own with no treatment (taking things really easy), some with a month or two of bed rest and head elevation, and some opt for surgery.

What to choose? That's why you need an expert. Even after healing, a fistula can open again. So your doc will probably advise against the weight lifting you mention, or any kind of straining.

I think that getting such a diagnosis could be a ray of light--if you can be patient enough to heal that, it may alleviate some of the symptoms that are troubling you so much.

If you research and find a knowledgeable doctor, please keep everyone updated, I think a number of others are needing this information.

 

[HomeSpun]

I had a PLF incurred by a head injury. I experienced a slew of symptoms and they were ever-changing. Migraines, pressure in head, moments of "spacing out," deafening tinnitus, all types of vertigo, etc.

After speaking with my primary care physician, a neurologist, and my case manager (workers comp), I saw an ENT. I had very specific hearing/balance/sight testing that as ordered by the ENT.

My suggestion for you Telis, is to make record of all of your symptoms, then research a specialist ENT in your area. Best of luck!

 

[Ed_furry]

Hi Telis. I suffered a perilymph fistula after barotrauma from a flight from the UK to NYC. I was fobbed off by my local hospital who just didn't understand what a perilymph fistula was. I lived with the symptoms of Tullio (dizziness with loud sounds), loss of hearing, tinnitus and balance issues due to pressure changes. (I haven't been in a plane since).

Then 2 months ago I went to a rock festival and the symptoms exacerbated overnight. My own voice was triggering dizziness, I couldn't listen to music, nor look after the kids. I became pretty much disabled.

I managed to find a specialist here in the UK who understood it and finally diagnosed a perilymph fistula after nine years. I had the operation last Thursday and I'm currently in recovery.

It's tough at present and I've been off work for 2 months but I'm hoping this is the beginning of the end.

Let me know how your appointment goes mate, it's a horrible misunderstood condition and I wish you all the very best.

Ed

 

[Brian Newman]

@Telis, did you ever find out if you got a fistula or not? I am having an extremely difficult time figuring out if I have one.

 

[Wrfortiscue]

@Telis, did you ever find out if you got a fistula or not? I am having an extremely difficult time figuring out if I have one.

How do you diagnose a PLF?

 

[Brian Newman]

How do you diagnose a PLF?

It's incredibly difficult. It's been 8 months for me and I still have no idea. They rarely show up on CT or MRIs. Most ways to find them is surgery and just patch the oval and round window. There are vestibilar tests, and rotary chair tests, and other ones that measure your eye movements when certain sounds go into an ear. Having vertigo, balance issues, and hearing loss is a classic PLF.

When I see videos of people who trip, can't stand straight with their eyes open, lean to one side, fall over when hearing certain sounds, those are big time fistulas. Some people apparently can have them but show few symptoms. Being 22 and before this being one of the healthiest people on the planet, I find it hard for my body to ever have balance issues from anything unless I'm drinking a lot. I'm still watching out for other symptoms but my sound distortions, horrible head pressure whenever straining or bending over, and hyperacusis that gets worse from working out, does not make sense at all.

I worked out for 4 years with tinnitus and hyperacusis with no changes ever. Never had anything like this happen. Seems too coincidental. The day after I deadlift 500 lbs I get all this and it gets worse every time I workout. Blood patches can sometimes help but all the ENTs I saw denied I had a PLF saying I would be throwing up everywhere and clumsy as hell. I'm taking 2 months off doing any strenuous activity to see if I improve. My hyperacusis has improved from a 10 to a 7.5 already. That's a start.

 

[kripa89]

@Brian Newman, we want more updates from you!

The same thing happened here: symptoms of hearing loss and tinnitus started after a deadlift session while I was partially sick.