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Old 04-02-2013, 12:00 PM   #1
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ferrier 87 HB User
Perilymph Fistula (Ear)... ?

Herein is a brief -- non-medical -- synopsis of my ear issue:
Approximately 3 years ago I was diagnosed with a cholesteatoma, after experiencing months of dizziness and vertigo. Shortly thereafter the cholesteatoma was excised, as was part of the incus bone. Initially my symptoms subsided, however, my dizzy symptoms would reappear intermittently. About 1.5 years later the cholesteatoma remerged and, as such, I underwent another surgery to correct this aberration. Furthermore, the incus was fully removed during the second surgery. Since the second surgery I have been experiencing dizziness, but not vertigo. I have been able to determine symptomatic triggers and partially avoid the dizziness.
In regards to my symptoms, I’ve noted that during a 3-month period (~2 months ago) when I was undergoing rigorous exercise, I was becoming dizzy during and directly after my workouts. This dizziness would persist for roughly 1-2 hours, and the dizziness was exacerbated when I ate food 30 mins post workout (I contribute this to chewing), and was ameliorated when I rested. I have since reduced strenuous physical activities (I usually only do a light jog 3-4X/week) and have tried to rest as much as possible. This change in activity, which encompasses a two month period, has made me feel exceptionally better (i.e., fewer dizzy spells). Nevertheless, I do experience bouts of dizziness.
Outside of dizziness here are a couple more points that may be meaningful. I normally experience a stiff neck that is concomitant with the onset of dizzy spells; nausea (rare); I have become sensitive to bright lights on computer screens, theatre screens, or strolling through the grocery store; following flights on the airplane I can become dizzy; I have noted that fluctuations in weather are concomitant with my dizziness; extreme difficulty in concentrating when symptoms are present; and I have a positive Romberg test. I always favour (i.e., fall) towards the side of my injured ear. Since resting, I have had a negative Romberg test.

Last note, 2 years ago I had an MRI of my brain and nothing remarkable was present.

Taken together, I suspect I have a perilymph fistula. My ENT concurs with my speculation. He is very doubtful it's a SCD. Do you think it is worth surgically investigating for a fistula? Are there any major complications with this sort of exploratory work? Is it fair to speculate that the ossicular chain reconstruction (i.e., removal of the incus) has disrupted the stapes and imparted a fistula on the oval window?

We have gone ahead with an ENG test and booked an MRI for my ear. As mentioned, the ENG test revealed nothing remarkable, at least according to the ENG technician. I am not sure we’ll see anything via MRI. I will let you know what transpires.

This darn ear problem has been the bane of my existence, and I am very grateful for you taking time to assist me in this endeavour.

 
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Old 10-25-2013, 10:54 PM   #2
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Marie 67 HB User
Re: Perilymph Fistula (Ear)...?

I know it's been a few months since you posted. Can I ask you how the cholesteatoma came about and will you tell me your approximate age rage? I have similar symptoms and had a ct but nothing showed up. Would a fistula or cholesteatoma show on ct?

 
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Old 11-02-2013, 05:12 PM   #3
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wakingtowinter HB User
Re: Perilymph Fistula (Ear)...?

Marie,

I had successful PLF surgery in June.

A Fistula usually does not show up on a CT. Mine did not.

Let me know what other questions you have. I came to this board in support before I knew if I had a fistula and I would like to help others now.

 
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Old 11-02-2013, 05:14 PM   #4
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wakingtowinter HB User
Re: Perilymph Fistula (Ear)...?

Marie,

I had successful PLF surgery in June.

A Fistula usually does not show up on a CT. Mine did not.

Let me know what other questions you have. I came to this board in search for support before I knew if I had a fistula and I would like to help others now.

 
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Old 11-03-2013, 01:11 PM   #5
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Narue HB User
Re: Perilymph Fistula (Ear)...?

Can you tell me how you got the fistula and what causes it? How were you diagnosed? What tests did they do? Were the tests uncomfortable or make you sick? How long did you live with it and what were your symptoms? Is an ent capable of diagnosing a fistula? If not what type of doctor would someone have to see? This all started with a ear infection that I had this summer. My ear hasn't been the same since. I feel off balance and dizzy alot of the time. My hearing isn't right in the ear and I hear air and a vibration and have sharp pain off and on below my ear and it goes down the side of my throat where the eustachian tube is. I've been told that I don't have a tumor as the ent scoped me. Whatever areas that covers in the body I do not know. This is ruining my life.

 
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Old 11-05-2013, 11:24 AM   #6
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wakingtowinter HB User
Re: Perilymph Fistula (Ear)...?

I am not sure how I got the fistula, It wasn't from flying or any other extreme pressure incident. My best guess is it was from chronic in-ear headphone use and cotton swab use all of which may have applied pressure on my ear drum and the bones connecting to the oval window. I can't recall the first time it happened because I was told I had an ear infection and then the symptoms went away (fistula healed on its own) A year later the fistula reopened when I inserted a pair of in-ear headphones in my ear and it didn't heal on my own.

I went to two different ENT's who both diagnosed me with Menieres disease. Below are the tests administered

Hearing Exam: Perfect

February 2013
ENG/VNG: 67% Unilateral Weakness on right side
Electrocochleography: Slightly raised fluid pressure on right side

March 2013:
MRI/CT Scan: nothing abnormal appeared on films.


The VNG tests are slightly nausiating but won't make you vommit, and if you havn't gotten them done you should, they are extremely helpful for doc's making a dx.

I started doing my own research in feburary 2013 and saw that My symptoms were similar to Perilymphatic Fistula. (I recalled the in ear headphone incident) I begged my current ENT to refer me to a ENT Surgen who could try doing the patching.

The patching worked and I immediatly felt the difference over the next few days, although it caused some POST op symptoms that I'm still recovering from, it was well worth it.

The Vestibular Disorders Association has a provider lookup which I highly recommend.

 
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Old 11-10-2013, 08:12 PM   #7
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Narue HB User
Re: Perilymph Fistula (Ear)...?

What is the surgery like? Would you please tell me everything you can about it?

 
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Old 11-11-2013, 11:50 AM   #8
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wakingtowinter HB User
Re: Perilymph Fistula (Ear)...?

Perilymph Fistula Patching is a middle ear exporation and patching surgery. It is similar to a stapedectomy which is a much more common procedure.

You can read about the risks of the procedure on the emedicine medscape website. The risks are relative low if done with a practiced and well regarded ear surgeon.

The pain is torrerable after the surgery. You cannot hear well for many weeks afterwards. You should expect to be off of work for 2-4 weeks. The longer the better, because after the surgery you need to be as immobile as possible in order to ensure that the tissue graft does not slip or pop open. No straining, no lifting. Being carefull when you chew etc. the guy at perilymphfistula•com has really good explainations of the post op symtoms after the surgery and the precations you should take.


Have you done a Fistula Test with an audiologist? You should really have this done before the surgery to help support the idea that you may have a fistula.

 
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