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Hi All.

I am a PET sufferer too. I've been diagnosed with Patulous Eustachian Tube by Dr. Kujawski in Geneve. Dr. Kujawski and Dr. Poe know each other and share almost the same approach to face with PET.

In my case, the abnormal patency of my tubes is due to a blind laryngo-pharyngeal acid reflux from my stomach, that has severely damaged my tubes: they got burnt and now the their mucosal tissue is "gently dying". That's what Dr. Kujawski said.

As far as I've understood, it is not easy to diagnose PET. I'm gonna tell you why he is so sure that I've PET.

1) Symptoms
--- AUTOPHONY: in my case it's very slight, but once in a while I can hear the sound of my breath amplified and like through a barrel; also, sometime I hear my voice differently, echoing in my ears, BUT NOT MUFFLED like when you have a cold
--- HEARTBEAT: sometime, I can hear it when my right/left ear is on a pillow
--- POPPING sensation when yawning or swallowing (only when swallowing saliva, not when swallowing food.... that's strange); sometime, they pop without any apparent reason
--- HYPERACOUSY: now it's very rare, but some months ago the sound of dishes, when my mother washed them, used to bother me
--- Sometime, I can hear the sound of my saliva going down my throat
--- HIGH FREQUENCY tinnitus. This is permanent!!!
--- LIGHTHEADEDNESS (did I spell it correctly?): not always, anyway
--- My drum moves too much in&out when I travel by train, expecially when the train enter into a tunnel or comes out of it

2) Impedenziometry: when I perform repeadtly VALSAVA's and TOINBEE's manouvres, my middle ear do not keep the pressure!!!

3) Endoscopy of the tubes: my laryngopharingeal zone is burnt by stomach acid and my tube (mainly my right one) show an athrophic anterior wall, so that you can se a small hole when they are in a relaxed position (that is when they should be closed).

Anyway, my PET is fortunately slight, so it is not a living hell, like a friend of mine in England is used to say.

The initial cure given by Kujawski in my case is: anti acid (proton pump inibitor) to reduce acidity, plus a corticosteroid nose spray to help my tissue to heal.

If this is not enough, surgery may be an option. A basic descritpion of this surgery can be found on Kujawski's site:

[url]www.eustachian-tube.net[/url]
(The site is under revision, but the links on the right still work)

I found also a small report by Dr. Poe about PETR (Patulous Eustachian Tube Reconstruction); Dr. Poe's surgery should be more or less the same as Dr. Kujawski's. Here's the report.

A question.... did you experience significant weight loss BEFORE PET started?
Just to understand if weight loss is a frequent predisposing factor.

Patulous Eustachian Tube
Reconstruction [ PETR ]
Dennis S Poe, MD

Objective: The patulous
Eustatian tube (ET) appears to be due to al longtidinal concave defect
in the mucosal valve at the superior aspect of its antcro-lateral wall
and causes troublesome autophony. It was hypothesized that submocosal
graft implantation to fill in the concavity within the patulos tubal
valve by PETR may produce lasting relief of symptoms.

Study design:
Retrospective review.

Setting: Tertiary referal center, ambulatory
surgery.

Patiens: 11 eustatian tubes in 8 adults with two or more
years of confirmed continuous patulos ET symptoms refractory to
medical
care.

Intervention: Endoluminal PETR was perfonned in 11
separate
cases using a combined endoscopie trans-nasal and trans-oral
approach
under general anesthesia. A submouscosal flap was raised
along the
antero-lateral wall of the tuba lumen up tot the valve and
mobilezed
superior 1 y off of the basi-spenoid, The pocket was filed
with
Alloderm implant restoring the nonnal convexity and competence to
the
mucosal lumen valve.

Main outcome measure: Autophony symptoms
were
scored as 1) complete relief, 2) significant improvement, 3)
unchanged,
4) worse.

Results: All cases reproted immediate complete
relief of
autophony. Results with follow-up ranging from 2 tot 18
months (ave 9.2
mo), 6 (55%) caes had complete relief of symptoms, 5
(45%) significant
improvement. There were no complications.
Correlation between patulous
ET and other conditions was strongest
with laryngo-pharyngeal reflux
and rheumatological conditions.

Conclusions: Patulous ET appears to
bu caused by a concave defect in
the rubal valve.s antero-latcral wall.
Submusocal graft inplantation
to restore the normal convexity to the
valve wall apperas capable of
giving lasting relief of symptoms. Long-
term study is needed.





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