Perilymph Fistula

Discussion in 'Support' started by Telis, Dec 12, 2015.

tinnitus forum
    1. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      "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. Thx
       
      • Agree Agree x 1
    2. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      I know @NiNyu thought he had this.
       
    3. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      No one else?? No one here with barotrauma or a head injury with symptoms that including dizziness, fullness in ears, fluctuating/worsening of hearing, hyperacussis, headaches and tinnitus?
       
    4. John G

      John G Member

      I have all those symptoms
       
      • Agree Agree x 1
    5. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      A lot of people likely have these symptoms but don't realize it may be a perilymph fistula.
       
      • Agree Agree x 1
    6. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      Can you describe the nature of your tinnitus?

      Do you have any lower pitches, humming, beeping, roaring?
       
    7. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      A follow-up question may be "how many people here have had a credible investigation to rule this out as a cause of their symptoms"?

      Very few I'll bet.
       
      • Agree Agree x 1
    8. markoana

      markoana Member

      Tinnitus Since:
      2.2013
      Is there any precise instrument or technique that can diagnose this condition?

      Subjective dizziness, fullness in ears, fluctuating/worsening of hearing, hyperacussis, headaches and tinnitus are so often...
       
    9. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      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.
       
    10. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      You might get lucky, I got into an ENT in 2 weeks.
      If a GP gives a shit he can label you as urgent on the referral.
       
      • Informative Informative x 1
    11. John G

      John G Member

      You are probably right.For some reason, I didn't want to go to my regular doctor to get an ENT referral. My regular doctor is useless.

      2 weeks ago I went to a walkin clinic about my ears. The doc from the clinic got me an ENT appointment for this Wednesday. That was pretty quick.
       
    12. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      i think this is my problem im email my doc about this tomorrow...this can be the only explanation for all my complications and worsening..i actually heard about this last week.. but also my ears leak like wax after i hear something noisy every time and i get so many sound spike reactions a day its crazy...my H is getting worse T is just getting louder with the tones getting stronger idk what else it could be
       
    13. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      Do the symptoms (the various tinnitus sounds) worsen when you lie down and the fluid pressure in your head increases?
       
    14. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      only with sound it reacts harshly to sound...the louder the sound the worse its going to affect me the tones pop out crazier and louder my body and head start burning up bad.
       
    15. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Yes absolutely
       
    16. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      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.
       
      • Agree Agree x 4
    17. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Thanks for your input. I will definitely keep everyone posted. I know the symptoms match, also the cause makes sense as well, maybe there is something here. I don't know if this is a good thing or a bad thing, I haven't done much today and my head feels presurized and I also feel light headed. It almost feels like I'm hanging upside down or something, it's very strange. I get this so often that I'm almost used to feeling dizzy and light headed, I can close my eyes standing and things aren't right, my head is definitely spinning. I feel like I have done so much damage now that there is no turning back, I work out so hard, even after all this happened, I can't imagine what has been done. I get major spikes that do not disappear, I always try not to think about it, just keep going. I have been doing heavy heavy squats lately, my head screams after I am done, I feel like I've really screwed up, especially since I started this all by poping my ears for no reason other than it feeling good. I had know idea that I could ruin my life doing this :( guess I will sit out and try and relax, workouts were kind of my way of coping with all of this.
       
    18. John G

      John G Member

      @Telis Thanks for your thread. I will mention this to my ENT this week. Worth a shot.
       
    19. Zimichael

      Zimichael Member Benefactor

      Location:
      N. California
      Tinnitus Since:
      (1956) > 1980 > 2006 > 2012 > (2015)
      Cause of Tinnitus:
      Ac. Trauma & Ac.Trauma + Meds.
      @Telis ... I have a suggestion.

      You know that I knew nothing about Perilymph Fistulas until I was doing the research in relation to that "Round and Oval Window Reinforcement" procedure for Hyperacusis I was going to do. Thence discovered that surgery was the standard surgical treatment for PF's, and thus reviewed the symptoms for PF's, etc. , etc. When saw the link to 'Valsalva Maneuver', the potential connection to you dawned on me. Pure chance so to speak. Etc., etc.

      OK, now if I had not been involved very specifically with bumping into the term Perilymph Fistula in this way, and I saw it as a thread title in Support, I would have 95% ignored it and not looked further. I mean, it sounds like the name of some heavy duty, kick-arse, deep sea creature or something! Nothing to do with me, etc.
      However, I have become more and more aware over time how many people do not have what I call "classical tinnitus" = acoustic trauma T, with the steady "ringing in the ears" stuff...like: EEEeeeeeeeeeeeeeeeeeeeeeeeeee, etc. Structural or Physiological issues with inner ears, or spine, or TMJ and so on, are much more relevant than I had previously thought.

      So my suggestion, to get you more of a potential audience for this important thread, is to "rephrase it" in the title. Get Markku to change it; or start another new thread and then after a brief intro like I suggest below...kick it with a hyper-link over to this thread!
      Here's how I would do it to get the warranted attention:

      1. Title it something like: Do you have these symptoms along with your tinnitus?

      2. Simply list a bunch of the most common Perilymph Fistula symptoms (without at first even mentioning the deep sea creature name) in this kind of format:

      ~ A simple
      ~ read down
      ~ list of the
      ~ most common
      ~ symptoms
      ~ in a clear
      ~ and precise
      ~ manner
      ~ Etc.

      Then say: "If any of these sound familiar, can you please switch over to the Perilymph Fistula thread (insert the link) and report/continue with this there. It may be very revealing to you and to others!...Thanks, Telis"

      Something like this. My sense is then people like me would perhaps click on the thread in the first place, just to see what it was about, and be less put off by the weird name that initially 'sounds' irrelevant.
      Ummmmmmmmmmmmm...Maybe this helps?!

      Zimichael
       
    20. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      Telis:

      Does your tinnitus worsen on exposure to
      loud sound?
       
    21. John G

      John G Member

      I read up a little. Gets a little confusing though. I get T ,dizziness,ear fullness,ETD, brain fog, sometimes I can feel fluid discharge in my right ear. Not sure if my symptoms match. I guess I will mention to ENT doc this week
       
    22. John G

      John G Member

      I know that your question was directed to Telis but my T worsens on exposure to loud sounds.

      It also gets worse when I do any physical work. For instance...I raked some leaves in the back yard yesterday. When I was done the T was much louder.
       
    23. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      John G:

      How about riding in a car?
       
    24. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      It's tough to diagnose, I guess this is part of the problem. If trauma occurred as a result of the symptoms this can be a good starting point in my opinion, for example a direct blow to the head/ear or barotrauma.
       
      • Agree Agree x 1
    25. John G

      John G Member

      Hey Blujay. I can hear the T for sure,when driving. I usually turn the radio and fan on. Helps a bit
       
    26. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      i get all those too. my ears runs down with fluid or wax everytime i hear something noisy or vibration type of noise.. also very bad T increases and also i start burning up bad you would think i have a bad fever
       
    27. Lauren Morse
      Cowabunga

      Lauren Morse Member

      Location:
      Salt Lake City
      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      Accoustic Trauma/Migraines
      Hi Telis,

      Yes, I can relate to your experience in it's entirely (all the symptoms, etc), but just perhaps not as severely (I do not have disabling T, for instance). After losing a bit of hearing and getting vestibular migraines from strenuous hiking yesterday, I am also beginning to think I have one or more fistulas because it is one of the only non-congenital conditions that can cause hearing and balance problems from physical strain.

      If you suspect this, I would advise you to stop lifting for a while (or do it very sparingly), come to think of it...if there is a membrane tear, all that pressure and strain could be making the condition worse, and clearly seem to be exacerbating your symptoms. Perhaps even as an experiment to see if you get improvement.

      So sorry to hear what you have been going through for such a long time, and I hope the next ent can give answers. Do let me know what they say with regard to this possible condition!
       
    28. Danob

      Danob Member

      Tinnitus Since:
      2014
      John,
      Been following this site for awhile but never involved in discussion. Been diagnosed with MD last year but refuse to believe it is my problem. Had hearing test last week with ENT and when they did pressure test in affected ear, it caused immediate dizziness. Audioligist suggested to doctor I had PLF. First I heard anything about this disorder, doctor reviewed my symtoms and agrees it could be a possibility. I see an ENT specialist next week to discuss this possibility. I am convinced I have this problem. I have done extensive research and have every symptom.
      I have severe tinnitus, left ear only. Lost all hearing in ear. Symptoms are beyond comprehension. Sleep deprevation is severe. My life is on hold right now until I can find relief.
      Have you made any headway with your diognosis and the PLF possibility? Would love to talk to anyone with experience in this field.
      Thx, Dan
       
      • Agree Agree x 1
      • Hug Hug x 1
    29. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Do not let the ENT railroad the discussion. If he isn't listening, stop him and MAKE him listen and make him come up with credible answers to your questions, even if you have to hold his Bentley hostage.
       
      • Like Like x 2
    30. John G

      John G Member

      I have a followup with my ENT today. I will try and mention it to him. Although he seems to be a prick and he didnt listen to me at all last time I seen him.

      @Danob
       

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