Perilymph Fistula - Progressive Hearing Loss

Jan 30, 2016

Though I am actually considering that I have something called basilar migraines, which in many ways can mimic fistulas, I want to make sure that there is no chance of small bilateral fistulas in my ears.

Essentially, I have had progressive hearing loss for 11 months now, along with a number of other symptoms that began to flare up in August. I have a history of 3 separate acoustic traumas that occurred earlier last year, and I have heard that under extraordinary circumstances acoustic traumas can cause fistulas at the oval window.

My triggers have included loudish noise above 80 decibels, middle ear pressure changes from flying on an airplane or wearing earplugs, strenuous exercise, lifting heavy objects, and clenching my teeth too hard at one point (I was angry).

Most times when I have an extended exposure to any of these factors, I am usually left with a small degree of permanent bilateral hearing loss. I am also often left with dizziness/imbalance symptoms, rocking boat vertigo, roaring or very high pitched tinnitus, parathesia in my hands and feet, pressure headaches that start at the temples and migrate to the sinuses, pressure behind my eyes and occasional aura, hyperacusis, middle ear myoclonus (muscle fluttering), feelings of cold liquid deep in my ears, and on a few occasions, a fuzzy lightheaded feeling that makes me feel I am going to pass out.
Many of these symptoms resolve, but some, like the vertigo and ear fullness, often stay around long term and present in daily episodes.

Do these sound like familiar symptoms to anyone who has (or has had) a PLF? Please do let me know of any similar experiences! Am on the verge of needing hearing aids, so I am trying to get to the root of the problem as soon as possible.

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Inner Ear Disorders :: Possible Perilymph Fistula?

My story is as follows: about a month ago, I began having ear pain that would alternate between ears. After a few days of this, the pain settled in my right ear, where I developed both pain and fullness that persisted for about two weeks. My ear constantly had the sensation that it needed to "pop," such as what one experiences when on an airplane. I went to my GP after a week of these sensations, who told me that it was likely Eustachian Tube Dysfunction and that it would resolve soon. She prescribed decongestants, antihistamines, and a steroid nasal spray. I took Sudafed and Allegra (but not the spray, as I am scared of steroids) but they did not seem to help.

Well, in the meantime, my blocked ear was annoying the crap out of me, so I decided to go online and look for some home remedies to try. One thing that I found was something called the Valsalva maneuver, in which you close your mouth, pinch your nose and blow out against closed airways to unblock the ear. I tried this several times over the course of a few days in attempts to get my ear to unblock. Most times it was difficult to get the right ear to "pop," and even when it did, it did not alleviate my symptoms.

Shortly after trying this maneuver, however, I read that the Valsalva maneuver can actually DAMAGE your inner ear and cause a perilymph fistula if done too forcefully. (I don't think I did it too forcefully, but I can't be sure.) Learning this sent me into a panic, and ever since, I have been experiencing a vague, constant dizziness that lasts all day. I have had trouble focusing my eyes and it feels, at times, like my brain is being sucked up and out of my skull (sorry). In the meantime, the sensation of fullness and pain in my right ear has improved greatly, but I am still being plagued by this constant dizziness. This dizziness has been present for a full week now. I have no sensitivity to loud noises, no hearing loss, and no episodes of vertigo. I do have a bit of wooziness when I am a passenger in a car, and I have felt extremely, unnaturally ill and fatigued throughout this ordeal. For those of you who have had PLF, does this sound like it could be a possible PLF? Is it even likely that I acquired a PLF after performing the Valsalva Maneuver?

Thank you so much for your help. I am hoping and praying that this dizziness is a fluke and not related to a PLF or inner ear damage, but the possibility scares the ****** out of me, regardless. I have had an extremely stressful year between losing my job, acquiring a crippling hip injury, and dealing with a host of other health issues, and the possibility of chronic dizziness is not something I feel capable of dealing with at this point.

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Anyone out there had this surgery? I'm in week 3 and wondering what to expect going forward.

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Perilymph Fistula - Surgery Or Not?

To cut a long story short - mid August 2014 I did a sinus rinse for chronically blocked sinuses. It went very wrong and I ended up with water trapped in my left middle ear. It didn't come out by itself and the pain and pressure was getting too much. I saw a GP and we agreed on using a nasal balloon to equalise the ears and try to get the water out. I also tried a few valsalva actions.

One day (first week of September), I was using the balloon when I felt a painful loud click in my right ear. This is where my real problems started.

I now deal with: constant tinnitus in right ear, dizziness, vertigo, some nausea, really bad head pressure, auras, vibrations and buzzy feelings throughout body, deep pain in ear - can almost feel blood or fluid in right ear.

Saw GP and it is a suspected Perilymph Fistula of the round window in the inner ear. I am seeing an ENT privately, hopefully in the next 2 weeks. Thing is, I am in England, UK and I am worried that they don't really deal with PLFs. Then I will be stuffed!

I am currently doing as much bed rest as I can as I read online this is best at this stage. I am however very very worried about what has happened. I am worried about leaking CSF fluid too. I certainly have enough head pressure.

Can this really heal with bed rest or do I need surgery? Also, I am scared about my tinnitus getting worse with surgery. Anyone who has had PLF repair surgery, what was the outcome? Did your tinnitus get worse or better in the end? Did the head pressure go? Has anyone recovered just with bed rest?

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Share Your Perilymph Fistula Experience

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ENT :: Perilymph Fistula Or Middle Ear Fluid?

I was hoping for some advice on a problem that I've had for 3 years. My main problem has been on and off vertigo and imbalance, however I don't think I have rotational vertigo because most of the time I just feel like inside my head is spinning? It also feels as if the ground is sinking beneath me.

Dizziness started 3 years ago, about 2 months after a serious bout of the flu which took months to recover from. At the time my ears were extremely blocked and I would do the Valsalva maneuver to help unclog my ears. It wasn't until now that I discovered you aren't supposed to do that? Anyway my dizziness was consistent 24/7 for nearly 1 year, at which time my symptoms seemed to disappear. As of April this year my symptoms returned.

Over the years I have been to numerous GP's, ENT's, neurologist, and all of which were unsure of what was going on. Most of them have said they don't believe it's Meniere's disease. My main GP said I DIDN'T have fluid in my middle ears, however since then 2 GP's have both confirmed that I DO.

Current symptoms:
Brain fog
My ears feel wet in the morning. Not enough to wet pillow
Tinnitus in both ears, slightly more prominent on the left side
Difficulty concentrating/problems with memory
Tingling/electric shock feeling on left side of scalp behind left ear
GERD and gastritis

A couple of things seem to exacerbate these symptoms, such as anxiety, hot and humid weather, having a hot shower (I now have to have cold showers, before I would have to sit down), menstrual cycle.

So I am pretty convinced that I either have a perilymph fistula or middle ear fluid. I have been using Nasonex for a couple of months which seemed to improve symptoms but now I am starting to feel worse again. My now current GP has suggested Ventilation tubes/grommets, however if I actually have a perilymph fistula will this improve symptoms or not have any benefit at all? I also have been prescribed SERC but I do not think it will help, as 2 years ago I took it and it made my symptoms WORSE.

I am wondering if I may have damaged my ears years ago when I had the flu by constantly trying to pop my ears. I have been allergy tested for Molds, grass, pet dander and dust mites, all negative. I have also been tested for MS which was negative, and all the routine blood tests etc. MRI showed I have a mid-septal deviation (my nose isn't straight) and previously enlarged adenoids, but apparently was of no clinical significance.

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Perilymph Fistula Recurrence 24 Years Later

In the spring of 1990 after a chronic right middle ear infection, I began having bad vertigo, nausea, and disequilibrium problems. I saw the ENT recommended by my PCP and after testing that came back normal was scheduled for exploratory surgery. A perilymph fistula was visualized and patched. Recovery was normal with some slight dizziness continuing for a few months and then resolving. Postoperative testing revealed no loss of hearing from the surgery and I was released from care to resume normal life.

Fast forward to March 2014, severe disequilibrium, tinnitus, and noticeable hearing loss brought me back to the same ENT (A relief, as he remembers me as being his only visually confirmed PLF) Testing showed hearing in the right ear normal but not as good as the unaffected left ear, other testing showed a possible recurrence of a PLF in the the same ear (right). I am scheduled for surgery on April 30, 2014.

There was nothing during this time that would account for the fistula to recur, no heavy lifting, head trauma, air travel, upper respiratory illness, etc. He feels that I may have a predisposition to increased pressure in my inner ear that causes the fistula to recur. Has anyone heard of this? And, if so, why would it take 24 years to happen again?

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Vertigo / Dizziness :: Head Concussion Possible Perilymph Fistula?

Around ten years ago I was the victim of a violent crime in which the back of my head hit the cement hard enough to crack the base of my skull in which the doctors said I had brain fluid leaking and caused black eyes, and cause me to lose consciousness. At the time blood was leaking out of my left year. For months after the injury I was very dizzy, ears feel full,had terrible tinnitus and have lost hearing in my left ear only. Eventually the dizziness went away but not the hearing loss or tinnitus. Since the injury I will have times when I "trigger" these same symptoms I had directly after my head injury. If I for example run, jog, look up or down for long periods of times, cough hard, sneeze hard, or basically jar by body in any way. I've been to many doctors who have prescribed many medications mostly to treat migraines and have also been told that they believe it is migraines. Nothing has ever worked. Bed rest and keeping still seems to be the only thing that helps but can take anywhere from a day, to a month to be able to function without symptoms again. This is ruining my life and my career is suffering. I seem to forget things easy and have trouble focusing which was never a problem before my injury. I am ready to be over this and have my life back. Please, anyone with any suggestions or have had these symptoms please help me. Oh and I've also had a few MRIs over these 10 years to rule out brain injuries and Acoustic Neuroma which all came back negative. There are more symptoms not as consistent but these are the usual when I have an "episode.

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Inner Ear Disorders :: Perilymph Fistula - Similar Symptoms To Meniere's

I am diagnosed Meniere's but suspecting that I may have Perilymph Fistula....very similar symptoms to Meniere's but cause by trauma-induced leakage of the inner ear.

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Hearing Loss :: Partial Hearing Loss With Clogged-up Ear

About a week ago, I was at home at the computer (I believe I was listening to music at the time), and I noticed that the hearing in my left ear had been significantly diminished (but not completely gone). About a minute (perhaps even less than a minute) later, it returned completely to normal, and so I assumed that it was just ear wax or something, and everything was fine now. However, a few seconds to a minute later, it went back to being diminished again. I can't remember for certain if I felt anything physically when all of this happened, but there may have been something that I felt in my ear - which led me to believe it was probably just ear wax.

I have researched on-line for possible solutions to this kind of problem, and I have tried every possibility that I could - peroxide, warm olive oil, blowing as hard as I can with my nose and mouth shut, blowing as hard as I can with my nose and mouth and other (good) ear shut, nasal decongestant (which successfully clears up my nose, but doesn't have any effect on the ear), hot steam bath, Similasan Ear Relief drops that are supposed to clear up water in the ears, jumping up and down with my bad ear tilted toward the ground, jogging, and of course trying to dig out ear wax with the ear wax curette that I have. Unfortunately, nothing has worked, and my hearing has been about the same ever since a week ago when it went out (diminished) for the second time.

I have been able to remove a lot of ear wax with the curette, and sometimes it seems to make it a little better, but it never restores my hearing to normal. Sometimes I feel like I am right at the spot where it is clogged up (if indeed clogged ear wax is the problem), because the curette seems to be hitting a spot that's clogged with ear wax (judging from what it feels and sounds like), but then when I dig out a bunch of ear wax at that spot, my hearing is still the same or perhaps only slightly better. Perhaps I am actually pushing the ear wax further inside, which was mentioned as a possible negative effect of trying to remove the ear wax yourself. Also, I am wary of not poking too hard or too deep, as that was also a warning given at the sites I visited in my research.

Swallowing never seems to do anything, but it's interesting that when I have a strong belch, I can feel pressure inside that left (bad) ear, and it really feels like it's about to burst out and expel whatever is stuck (if it's the case that something is stuck), but it never does. Maybe whatever is stuck in there [ear wax, presumably] is just in so tight that nothing seems to be able to remove it. However, the odd circumstance that occurred when the problem first originated - which is the fact that it got better right after getting clogged up, and then got clogged up again - would seem to suggest that there may be another reason for this happening, other than plugged-up ear wax.

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Last year(2014) I started having some health issues. In March I was diagnosed with Mastoiditis. After that I began to have vision issues with pain and was diagnosed with Optic Neuritis in my left eye. I did 3 days of Solumedrol at home and followed with oral steroids. Since then I have had on and off hearing loss on left side and have lost my sense of taste 3 times for a few weeks. I recently had a mri and they found a 12mm choroidal fissure cyst on my left side. I also have tingling and numbness in my left foot and leg. I still have blurry and double vision in my left eye at times. I had previous ct scans and mris and there was no cyst present. Could this newly found cyst be causing my issues?

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In the spring of 2015, I noticed that there was a constant ringing in my right ear. Around June, I got in with an ENT, who referred me to an audiologist, who diagnosed me with hearing loss. Progressively, the hearing loss has gotten worse. I am a teen, so to me, this seems quite uncommon.

In the fall of 2015, I noticed a constant ringing in my left ear, as well as my right. I checked with my audiologist, and I had a mild hearing loss in my left ear, and a moderate/major hearing loss in my right.

I have also been having these dizzy spells that I like to call "flares", for the past year or so. During these "flares", I get extreme vertigo, fullness in my ear, and obnoxiously loud ringing in my ear. These attacks normally happen in only one ear at a time.

On top of all of this, I have been dealing with joint pain, fatigue, and muscle pain. My memory has gotten awful, and I like I'm in a brain fog all the time. My mom has lupus, so we are thinking it could be autoimmune.

My rhuematologist, ENT, and general doctor sent me for blood work, and my ANA was positive, along with my heat shock protein. This is all so confusing!

Does anyone advice, suggestions, or personal experiences they'd like to share? I have no idea what to do! I am on 500mg of naproxen and turmeric for my joint pain/inflammation, and a bunch of natural supplements in hopes of feeling a little bit better.

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After a night of moderate drinking I had my first and only severe episode of vertigo, which left me violently vomiting and unable to walk. After which, I experienced a month or so of very mild vertigo attacks, lasting 4-5 hours at a time. I felt unable to exercise and spent a lot more time at home. Throughout this time I always felt unbalanced and even a drop of alcohol would exaggerate symptoms. 

A hearing test came back fine, to my surprise, and I was treated for vestibular neurosis and given Betaserc for almost 3 months. I had no vertigo whilst on the medication but have had two or three minor episodes since coming off it (during yoga classes, playing football but also when lying in bed). The first specialist was happy the vestibular neurosis had been treated and any imbalance etc. was a product of my body overcompensating or lasting damage. I continued to turn to the extreme right when trying the Unterberg test. Now, my symptoms are fullness in my left ear, which occasionally proves painful and some mild tinnitus. The persistent fullness led my GP to refer me to another specialist, concerned it sounded like MD. Another hearing test and a pressure test both came back fine. I would suggest my hearing is more muffled but could this just be a sensation I notice because of the fullness? I am adamant my hearing suffered immediately after the vertigo attacks (before being treated) because I remember it being relatively distressing. I have been given Vinpocetine to try and hasten recovery of what the specialist believes is just a viral infection and to help with the tinnitus but I have seen no difference. I feel largely like I am not being taken seriously. It is coming up to 6 months now and I am desperate for some resolution or diagnosis that I can work with to try manage these symptoms. I am really active and travel a lot. If I should expect vertigo symptoms to return, I feel I would need to adjust or review my lifestyle as to not take unnecessary risks. Any one else in such situation? Or know anything about altitude and ear issues? Any advice or opinions are very much welcomed. Specifically, I was searching for information on whether it is possible to have MD but without suffering hearing loss? I am only 24 and so had wondered if my hearing could have been affected but remained within the so-called ‘normal’ range?  

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