Author Topic: Perilymph Fistula  (Read 4639 times)

Offline ptrhbd

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Perilymph Fistula
« on: Apr 06 2013, 08:49 PM »
I was Diagnosed - wrongly I believe - with MD in 1985.

A few weeks before my first attack of severe vertigo, I had flown in an unpressurised aircraft, taking off, flying to altitude and landing several times in some pain as I had a severe cold and could not clear my ears.

After a rather unhelpful trip to Harley Street ( Company BUPA) I  found a local "old school"  surgeon who offered to fit a grommet. He new that was not favoured as a treatment for MD but had sometimes found it had helped, which it did in my case, reducing the vertigo attacks and the Tinnitus and recovering some of my hearing loss which is quite severe but not total in the one ear affected.

For a decade I had no more virtigo attacks but they re-occured after  a decade, at a time when I was unders some sever pressure and I suspect I had bouts of high blood pressure due to stress. 

One other symptom that re-ocurred was that a different fluid to normal would come out in the same side nostril, (When I had my first attack, I used to get sudden releases of small quantities a colourless liquid not unlike a nose bleed but very short-lived, which clotted in hard lumps and stopped very quickly)

I managed to persuade a BUPA surgeon to put in another grommet and again it worked for a decade.

Concerned that I might get a problem in the other ear. I tried tto get the UK Menieres Society  to sponsor some research into the CAUSES and PREVENTION of MD using information from atheir Members.  However, most ENT consultants are surgeons and they are only interested in treatment AFTER attack and MenSoc did not wish to upset them by challenging them to do more on prevention.

Daniel Brown, a Research in Sydney who had trained in the USA,WAS interested in how MenSoc Members could and we discussed some symptoms of the disease that might help him understand the causes, including those mentioned above.

However, upon hearing them he advised me that I was  almost certain to have Perilymphatic fistula i.e rupture of the membrane between the fluid-filled part of the ear/balance organs and the eustachian tube.  Having retired, I no longer have private medical insurance and the consultant I was referred to as the "NHS Expert in the South on Menieres Disease" refused to recognise my symptoms or the possibility that I had Perymph Fistula or my suggestion that he might fit another grommet "We no longer fit grommets for MD". I don't think he knew what PF was or how to diagnose it.

However, I have two sons who are doctors, GP in Norway and an Anaesthetist in the UK and after a couple of years I looked at what was now available on the internet with them.

To my surprise, Wikipedia's entry on PF now quotes a janaese paper that says that the way to diagnose PF is to fit a grommet. If it works, the chances are that it is PF. However the papers are reticent about WHY it works.

To my research Engineer's simple mind, the ventilating of the ear vie the ear drum allows the liquid discharging from the fistula (rupture) to congeal and the rupture to heal.  In the US they appear to use an endescope through the ear drum to view the Fistula and can repair surgically but I have not heard of it being done in the UK.

Does anyone know a better informed ENT surgeon or Researcher in the UK than mine?

Does anyone else have the same experience and symptoms as my own and/or think now they might have PF?

Has anyone been diagnosed with PF and/or treated for it in the UK?

Did anyone using a Meniett device successfully ( which involves fitting a grommet and pressure cycling the inner ear) have any of the same symptoms? The process that would accelerate the healing process by drying the inner ear,  It might be a more plausible explanation for why it works than some contained in early literature on the device.

TRegards to all


Offline Elaine

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Re: Perilymph Fistula
« Reply #1 on: Apr 30 2013, 01:35 PM »
I would suggest a search of Dr Foster website and see what that comes up with .You will need a neurotologist I think .Whereabouts in the country are you ?
Elaine x

Offline nellie1

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Re: Perilymph Fistula
« Reply #2 on: Jun 08 2013, 06:20 PM »
I have had the clear liquid come out of my left nostril, this has happened once, 6 weeks ago and is exactly like a short nose bleed, I cupped my hand and it was no more than a teaspoon but it did alarm me. It hasnt happened since but I am spinning daily.


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Re: Perilymph Fistula
« Reply #3 on: Jun 08 2013, 10:44 PM »
Hi there, please check out Prof Saeed..... i am sure that someone whom i once spoke to once had this problem and as a i recall, Prof Saeed specialises in this.  I apologise in advance if i am incorrect though.. Best wishes.  Simon
ps he is my ENT consultant and is based at the Royal National in St Pancras, London

Offline turnitaround

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Re: Perilymph Fistula
« Reply #4 on: Jul 22 2016, 02:51 PM »
Hey ptrhbd, how did you get on with finding some help for your suspected PLF?