The Medical Consumer's Advocate
Patulous Eustachian tube
(Patulous Eustacian tube, which
this correspondent abbreviates as PET, is a
condition in which the Eustachian tube stays open
most of the time. The Eustachian
tube is a part muscular, part cartilaginous,
part mucosal tube which extends from the middle
ear to the roof of the throat. It remains closed
most of the time and opens only occasionally,
throughout the day, in order to allow the air
pressure in the middle ear to equalize with the
ambient air pressure. If the Eustachian tube
remains open for too great a period of time, one
will have the unpleasant sensation that one's
voice is too loud, distorted, or has an echo--
this symptom is called "autophony."
I have chosen to reprint nearly
all of this correspondent's very long letter
because it highlights the frustration associated
with the condition itself, as well as the
frustration of having to deal with a medical
community that is largely ignorant of this
condition.)
Q:
I have been suffering from
patulous ET for 2 years now and have been severely
frustrated by doctors who don't seem to know about PET or
don't seem to care. I have seen 11 doctors including 3
ENTs, a peridontist, an allergy specialist, a cranial
osteopath, a pyschotherapist, 5 family doctors. It took 6
months and 2 ENTs to determine that my problem was that
my eustachian tube didn't close properly, but they
couldn't offer me any treatment that worked and then I
took it upon myself to find out more info using the
internet as my primary tool. I have met a few PET
sufferers who have all tried different treatments and
some have been successful, others not. I have discovered
that even though we all have PET, we don't necessarily
have the same causes or exact symptoms.
First symptom: popping sensation upon swallowing and
talking in my right ear. Distortion when I talked. This
gradually got worse so I went to the first doctor who
said I had fluid in my ears and told me to take
decongestants - didn't work. Went back to another doctor,
said the same thing and gave me more decongestents,
didn't work; went back to my own family doctor who said I
had nothing wrong with my ear and it was all in my mind.
At this point I began to get depressed. I demanded to
see an ENT - he said he had no idea, didn't mention
e-tube or anything and told me there was nothing he could
do. Changed family doctors, she sent me to a 2nd ENT who
finally told me my problem was patulous ET. Went to see
an allergy specialist who said he couldn't find anything
(the ENT put me on Nasacort spray as I was having post
nasal drip etc)...
After six months the condition took a turn for the
worse - my ear began to pop when I was travelling (train,
bus etc) and the autophony got much worse. I found that
if I talked too much my ear would pop and stay open for
hours and even if I stopped talking it could take hours
for the tube to close again. I met some folks on the web
and through NORD who suffered from PET and they all told
me about their situations. One person has had laser
acupuncture in NY and then took the nasal drop trial in
Santa Barbara (the nasal drop is supposed to irritate the
tissue and make it swell up thus forcing the tube to
close) - the treatment has worked for her but out of 10
people I talked to, the nose drop has only given 3 people
relief so there is no guarantee there). Another person
has had catheters inserted into both her e-tubes and this
has given her relief (a doctor in LA performs this
expensive procedure). Another person advocated regularly
lying down 4 times a day. Most PET sufferers say that
lying down or putting their heads between their knees
closes their tubes, unfortunately I seem to be the only
one this DOESN'T help - in fact it can make my ears pop.
Today my PET has taken another turn for the worse, in
that my e-tube opens now under the slightest duress. If I
swallow involuntarily, if I sneeze, if I drink anything,
if I burp even slightly, lie down etc and takes forever
to close. I spend a lot of my time alone so I don't have
to talk (talking is the worst trigger for me), I am a
virtual recluse now, I avoid talking and social
situations like the plague, I avoid travelling (except
the plane seems to be fine, I guess because it is
pressurized), and of course my job creates havoc for me
as I have to talk a lot so I have gone to working
part-time now. I have learned to swallow in a way to
avoid opening the tube up. Basically this thing is
controlling my whole life. When I can't avoid talking I
wear an ear plug to help muffle the autophony, which
helps but my main problem now is that my left ear is now
becoming affected. So what to do? I can't plug both ears
then I won't be able to hear.
I am trying to figure out WHY I have this problem. I
also have post nasal drip and tinnitus - both started at
around the same time as PET. I find that I don't have any
mucous in my nose at all anymore, I don't sneeze more
than I should so it doesn't feel like an allergy. The
only time I get relief is when I have a cold...
Here is my theory: I think that somehow my normal
mucous production has somehow halted and therefore the
e-tube is not properly lubricated so cannot stay closed.
I find the ONLY thing that helps the tube to close is
inhaling finely ground pepper which irritates the
membranes and swells the tube shut OR creates enough
moisture to close the tube up. This is only a temporary
measure but it's all I have at the moment.
I am 30 years old, and currently pregnant too so it's
getting worse, as I expected, but after I give birth I am
going to California to take part in the nose drop trial
and if that doesn't work I will then get the catheters
inserted into my tube. I have heard from all the PET
sufferers that the ventilation tube in the ear drum just
does not work.
My question to you is, what do you think is causing
my PET? Some people think PET is caused by poor blood
circulation to the skull - not enough blood pressure to
keep the tubes closed hence people getting relief from
lying down etc; TMJ; lack of proper mucous lubrication. I
have ruled the first 2 out and am gunning for number 3.
What do you think? If so, is there anything I can do to
get my mucous production back up to where it should be?
Is it a hormonal or allergy problem?
Sorry to ramble on but I thought you should hear my
history first. Thanks you very much for helping.
A: Your letter served to remind me yet
again that I need to put even more info up on my site
regarding patulous ET. But let me respond to your questions.
There has been a lot of speculation
as to cause. There definitely seems to be an association
between pregnancy and patulous ET. One possible explanation
for the "pregnancy link" has to do with the general
softening of certain connective tissues that occurs during
pregnancy. This is a direct result of the hormonal shifts
of pregnancy. The Eustachian tube has a
partial "skeleton" made up of cartilage; perhaps
this, too, softens during pregnancy, causing the ET to sag
open and remain so. But this is speculation.
There is also a clear association
with weight loss. Even weight losses as trivial as 10 pounds
or less (5 kg) can cause patulous ET. Here's the speculation
with regard to weight loss: there is some fat surrounding the
ET; perhaps this fat helps to keep the ET in its usual
(closed) condition. Lose the fat, and the ET flops open.
If there is any relationship with
allergy, it is an inverse one. I have heard some people state
that their patulous ET routinely improved during an allergy
season. This is an easy thing to understand. Allergy causes
mucosal edema (swelling of the tissues of the nose and
throat) and this will tend to close the opening of the
Eustachian tube, which is immediately behind the nasal
cavity, high in the throat. Many of the maneuvers aimed at
the treatment of patulous ET are designed to increase mucosal
edema.
PET is not a matter of poor blood
circulation to the head. The head does not lack for blood
circulation. However, there is a normal redistribution of
blood which occurs when our posture changes, owing to
gravitational effects on the blood. If you are on your feet
for long periods of time, blood tends to pool in the legs and
feet; when you lie down, some of that blood
"returns" to the head. (The same thing occurs with lymphatic
fluid.) Incidentally, many people note that they are unable to
breathe through their nose when they lie down, owing to
swelling of nasal tissues because of venous congestion. So,
the recumbent position helps in patulous ET thanks to
swelling (venous congestion) of the tissues lining and
surrounding the ET.
For more information on patulous
ET, including a discussion of the various treatment options,
you may want to look at the following link:
PLEASE READ AND ABIDE BY the
disclaimer at the top of the page on this link! This material
is intended for other physicians, not patients. The material
on patulous ET is about 2/3 of the way down the page. Print
this out and share it with your doctors-- you will be doing a
great service to any other patients they see with patulous ET
(which is rarely diagnosed by non-ENTs.)
Good luck!