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Old 12-07-2011, 04:35 PM   #1
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No Idea Whats Wrong With Me! (Perilymphatic Fistula??)

I'm hoping that someone here on this board will be able to point me in the right direction.....because my doctors have no idea.

I went totally deaf overnight back on the 4th of August. Woke up that morning, noticed ringing in the ear and that I was totally deaf in my right ear. The next day is when the vertigo/lack of balance set in. The first month was terrible, could not walk a straight line but began to improve after the first month.

My GP initially thought I may have Labryinthitis. Subsequently saw an ENT specialist he said, he didn't think it was Labryinthitis, but at the same time had no idea what it was.

I've had an MRI and CT Scan to rule out a stroke (I had a heart attack approx 1.5 years ago). Also saw a audiologist and she told me after all the tests she felt confident that whatever was causing my blockage it's not nerve damage related.

I also had a test (I forget the name of it now) where they made me look into a dark machine and follow lights as well as the second part, jetted water into my ears while I wore a dark mask which apparently had infrared cameras.

It's been very frustrating as I can't get back in to see my ENT doc until Jan to find out the results and if he has any idea what it is.

My symptoms today include 24/7 tinnitus. A touch of vertigo when I tilt my head to the right or suddenly move my head to the right. As for hearing....essentially still deaf. I can hear sounds but nothing in clarity. For example, I can turn the phone on, press it to my ear and faintly hear the dial tone. I cannot hear if someone talks to me on the phone, nor if someone is talking to me on the right side. I also find that if there is a lot of background noise, my ear almost feels like it's a broken speaker with sounds trying to get through and makes it virtually impossible to hear anything through the left ear because it's so distracting.

Any ideas! I'm so desperate to figure out what the hell is going on with me. Almost going on 5 months now.

Reg

Last edited by TVfan; 01-03-2012 at 06:06 PM. Reason: New Info

 
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Old 12-07-2011, 06:55 PM   #2
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Re: No Idea Whats Wrong With Me!

Have they ruled out menieres?

 
Old 12-08-2011, 05:13 AM   #3
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Re: No Idea Whats Wrong With Me!

My GP said it wasn't Meniere's due to the symptoms and the way they presented themselves, he also said because the epley manouvere didn't help, that essentially confirmed his thoughts. My ENT didn't even bring it up so I'm assuming he's of the same opinion.

Then again, when I saw the ENT, it was like a sausage mill, get 'em in and get 'em out ASAP.

 
Old 12-13-2011, 04:55 AM   #4
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Re: No Idea Whats Wrong With Me!

Saw my GP yesterday and I got a copy of the ENG test results. No idea what this stuff means.

Saccades: Normal, Smooth Pursuit: Normal, Optokinetic: Normal, Positional: Normal, Calorics: Paresis Right
Impression: Abnormal ENG. Suggestive of right labyrinthe or afferent pathway dysfunction.

I don't see my ENT until 10 Jan. Anyone know what the above means? I'm praying to God that this is something the ENT can treat. Was hoping some more knowledeable folks here might be able to provide comment to give me an idea of where I'm headed.

Thanks

Reg

 
Old 01-03-2012, 06:05 PM   #5
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Re: No Idea Whats Wrong With Me!

Still doing a lot of research and reading. I have my appt with my ENT on the 10th, and it can't come soon enough. I am not expecting any good news based upon my last visit with him, like a sausage factory, don't know whats the matter with you, get out kind of feeling. I've talked to my GP (I'm in the Canadian Military) and told him I'm not happy with this guy. Through my research I've also discovered that ENT's don't really specialize in inner ear issues, but I should see a Neurotologist. Fortunately for me, there is one here in Victoria BC where I live so my plan is to go back to my GP and ask to be referred to the Neurotologist.

Having said all this, I happened upon Perilymphatic Fistula info, does anyone out there who is suffering from this affliction think I may have this??

 
Old 02-07-2012, 08:08 PM   #6
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Re: No Idea Whats Wrong With Me!

Hi TVfan,

Hope all is well. Have you seen an otologist? Otologist specializes in the normal and pathological anatomy and physiology of the ear (hearing and vestibular sensory systems and related structures and functions) as well as its diseases, diagnosis and treatment.

Last edited by Administrator; 07-10-2012 at 01:05 PM.

 
Old 02-08-2012, 03:09 AM   #7
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Re: No Idea Whats Wrong With Me!

I've asked for a second referral to a neuro-ontologist. Unfortunately I'm at the mercy of my GP as I'm in the military. He was resistant, and when I became insistent he finally relented. Or so it seemed at the time. It's been approx 3 weeks and I haven't heard anything either from him or the neuro-ontologist.

 
Old 02-18-2012, 08:10 AM   #8
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Re: No Idea Whats Wrong With Me!

Hi TVfan-
I understand waiting for the diagnose part. A little of my background… I always worked out up until January 2008, I was doing sit ups w weights and when I stood up - I got lightheaded, dry mouth, spinning dizziness, disoriented at the gym. I immediately went to the ER and was diagnosed with dehydration.

Ever since then …. As of April 2008, the symptoms of the environmental spinning has resolved. However, on daily basis, after 10 minutes of doing any type of activity esp. moderate walking. I fight off a feeling like I am about to faint. I get extreme fullness and pressure in my left ear then lightheaded which lead to symptoms of nausea, confusion, shortness of breath or fainting. Then follows a tremendous head pressure from the base of my skull on the leftside and pressure behind my eyes to the top of my head (not a headache) and then my balance goes off to the point that I can’t walk straight any longer. Then my legs feel heavy to move. I have difficult time in large crowds and around loud noises. My hearing is super-sensitive…I can hear a PIN drop. Throughout the ordeal, my symptoms are heighten when I only get 7-8 hours of sleep (which is considered adequate amount of sleep). However, my body seems to still think it’s still resting so I have to have at least 9 to 10 hours of sleep. This has helped me to function a little better so I can get to work.

I had a host of tests… I have seen a stress doctor for testing on my heart and thyroid, which came out perfect and normal. I have had a MRI and Brain Stem w/ and wo contrast, which came out perfect and fine. I have seen an Audiology doctor for audiology testing like caloric test (horrible test for me).

In addition, I had X-rays on my lungs which came out fine. Pretty much, every doctor (14 in all) that I had seen stated my blood in all areas and blood pressure/blood sugar show that I am completely healthy. But no one could give me an answer. After all that, I really didn’t want to go any further of searching and wanted to give up….For a moment, I thought I was really going crazy and this was leading me to be depressed.
But with LOTS of PRAYER…. FINALLY….NOV 2011 - another visit to the ER, after being released as normal AGAIN…the traveling nurse that was helping the ER doctor mentioned that I should see another neurologist. So I took her advice and the neurologist sat with me to explain the human body balance system (brain, ear, spine). Since his expertise was the brain and spine, he ran a host of tests on my brain for MS and some nerve testings – all came out normal. Then he referred me to an ear specialist – neurotologist.

Dec 2011 - My first visit with the neurotologist – he said it sounds like Perlymph Fistula. I have tear in my inner ear which is causing inner ear leakage issues and is triggered by activity that causes head pressure. So of course, more testing needed to be done for confirmation. He gave me brochures on “Perlymph fistula” and I was set up for the following testing which all came out abnormal: (EQUITEST (E3), ELECTROCOCHLEOGRAPHY, VESTIBULAR EVOKED MYOGENIC POTENTIAL (VEMP), VESTIBULAR AUTOROTATION TEST). And I had a special CT SCAN on the temporal bone/middle ear (oblique views), which came out normal. My CT Scan didn’t show any fracture damage to the inner ear 'bone' so this is why the results were normal.
To my understanding, a tissue tear in the middle ear normally heals on its own. If not, then surgery is required. Surgery involves to go behind the eardrum to place body tissue where the tear may be and majority of the time the tear isn’t visible to the dr. this is why it’s good to eliminate that the cause of the symptoms isn’t from other organs of the body.

So this is where I am now after receiving my diagnose. …I am not too encourage of the part involving removing of the ear drum, esp since the ear drum helps with hearing …so now just weighing the options and looking for a second opinion. and searching for people that have had the surgery to hear the success rate. But I am really glad to have a sense of direction.

I hope the sharing of my experience benefits you and anyone else on this forum. Especially, after hearing that all other body organs are functioning normal. I can say it has been very scary journey for me. But with lots of prayer and never losing hope really helped to get an answer.

Most definitely I am sending lots of wishes your way that your doctors will help you get to the bottom of what is causing this for you.

And always remember ….You know your body. You are not crazy and this is a VERY SERIOUS LIFE CHANGING INJURY. If a dr doesn’t understand your symptoms…never lose hope..keep searching until you find one an answer.

Last edited by Administrator; 07-10-2012 at 01:06 PM.

 
Old 02-28-2012, 04:48 AM   #9
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Re: No Idea Whats Wrong With Me!

Finally, someone who knows what I'm going through!! Thank you so much for the response, very articulate and informative. I finally won the battle with my doctor and have been given a referral to a Neurotologist. Unfortunately it isn't until May though. What makes it even more frustrating is that I will most likely be relocating from Victoria BC to Barrie, ON (Canada) in July so even if the neurotologist figures he can do something to help me, it probably won't happen in time before I move, thus I'll have to start the whole process over again. The good thing is, there are other neurotologists in Toronto.

My symptoms all remain the same. Slight dizziness when I shift my head to the right, constant tinnitus, completely deaf. I can't imagine having to live with this for the rest of my life but am trying to deal with it one day at a time.

Thanks again for the reply, it's comforting to know I'm not alone.

 
Old 05-10-2012, 09:25 PM   #10
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Re: No Idea Whats Wrong With Me!

Well, it only took 8 months, but finally got a diagnosis on my hearing issue. Got to see a neuro-ontologist and inside half an hour he advised I've been afflicted by Sudden Sensorineural Hearing Loss. Hearing will never come back, tinnitus will never go away and the vertigo/balance issues will not resolve themselves unless I do specific exercises to help the brain adjust to the problem. Thats going to take some work! This was a few weeks back that I saw him. Although it was not good news, surprisingly enough I was relieved to finally be told whats happened to me, the prognosis etc. He was very surprised when I told him that my GP refused to put me on Prednisone when this first happened back in August 11. Told me that was the only window of opportunity for hearing to come back. Looks like I'll have a good case to submit to Veterans Affairs (I'm in the Canadian Military). All this to say, I got approved today for a CROS system. Appt is on the 22nd, hope to God that this will bring some normalcy back to my life. I still can't believe just how debilitating hearing loss is. The things we take for granted!

 
Old 05-21-2012, 05:34 PM   #11
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Re: No Idea Whats Wrong With Me!

Hi. I'm glad that my story was informative and not a total downer in a way. I reside in the Virginia area and I still have no idea on my recovery part. But finally I am scheduled for a second opinion on the 4th of June at John Hopkins hosp. I hear this is a good place to go for the types of symtoms I am going through as their doctors specialize in it. I hope to goodness, this doctor is making some sense and pray that I can be healed. I am still going through the same symptoms each day, fighting off the feeling like I am about to faint, and extreme pressure in my temple if I walk over 10 - 15 minutes and the list goes on. It's been 4 years now......I just go day by day and thank God for each day I make it through. But you are so right! The ear is an amazing organ. Never in my life would I have thought how much safety and security our ears gives us in life. Most definitely, it can be taken for granted. I am wishing you the best with your next appt., especially to receive a better specialized treatment. And as you mentioned, at least you now know the condition so you can research further. Blessings to you and I will prodvide an update once I receive my results.

 
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