Friends,

I'm a 35 year old male.

I'm posting this message as a last resort. Hopefully one of you has some leads for a Patulous Eustachian Tube cure.

I was diagnosed with PET. The symptoms began in 2005 but I didn't receive an official diagnosis until 2006. I'm a classic case:
- The sound of my own voice is overwhelming an unbearable. It's hard to describe it to someone who hasn't experienced the problem, but when I speak, it's as if the sound is coming out of my left ear instead of my mouth.
- I can hear myself breathing in my left ear.
- I can hear my own heart beat when exercising.
- Putting my head between my legs eliminates the problem, but only for a matter of minutes.
- CAT scans don't show anything of interest.
- Doctors have noticed that I'm quite slender and suggested that weight gain might help. It didn't.

My life has changed dramatically since the onset of PET. Fortunately I have a job that doesn't require much in the way of verbal communication so my employment is secure, but my social life has completely evaporated. I've become a virtual recluse. No friends. No dating. No human contact whatsoever. I'm seriously considering learning sign language and pretending to be deaf so that I'll never be expected to speak again.

I'm not really sure where to go from here. There's a doctor in Santa Barbara that provides liquid drops designed to create scar tissue in the inner ear, effectively keeping the ET closed. The problem is that the drops are not administered via the ear but via the nose. You have to sniff the drops just perfectly in order to get the fluid into the ear. It's very difficult to get the procedure right. Furthermore, it's absolutely excruciating to use this product and it seems to have been met with mixed success.

Then there's Dr. Poe that I've heard so much about. He's reportedly "the man" when it comes to inner ear problems. I wouldn't mind flying out to Boston to see him but I don't really understand the nature of his treatment (i.e. Is it surgical in nature?). I wouldn't want to fly all the way out there for an appointment just to hear him say that I "should try eating a lot fatty foods" (yes, I actually had a reputable ENT suggest this.)

I'd appreciate any help or advice that you can provide.

Wow, you've got quite a tale there. Well I don't know much (anything) about PET, but can offer support and sympathy for your condition. Just know that there are lots of people here, dozens if not hundreds, who are going through similar troubles and who wish you the best. It sounds like you don't really get dizzy, which is good, but the sound of your own voice must be driving you mad. As a musician I can't imagine what it would be like to experience this. I'm surprised that you haven't turned up something sooner on the internet...that disorder can't be so rare that there isn't a support group for it. Anyway, I don't think I've helped much but please take care and keep your chin up. Hopefully an answer will be presented soon.

Dan

Go and see Dr Poe. You won't regret it. This is the strongest thing I could suggest - you need to see the absolute best you can, even if it means flying to another city, state, country, continent whatever. There are a lot of cowboy ENTs out there who just make things up as they go along.

Have you been evaluated for superior canal dehiscence?

Go and see Dr Poe. You won't regret it. This is the strongest thing I could suggest - you need to see the absolute best you can, even if it means flying to another city, state, country, continent whatever. There are a lot of cowboy ENTs out there who just make things up as they go along.

Have you been evaluated for superior canal dehiscence?


Hi ADMW,

I think you're right about Poe. I certainly have nothing to lose by scheduling a visit and possibly everything to gain. I can't seem to find any information on his specific treatment methods for PET though. Do you have any information?

Superior Canal Dehiscence? Wow, I've never even heard of that one. None of the doctors I've seen have even mentioned it. I'll ****** it and see if my symptoms match up.

Thanks again,

EarOfDespair

Try doing a search on Lib. I believe she may have had some experience with Dr. Poe. I believe she still comes on the boards occasionally as she was quite helpful to me a few months ago so maybe you can address a thread to her.

These inner ear problems are definitely life altering and even more so when you can't get any help from any doctors.

superior canal dehiscence

This can be checked with a CT Scan that takes a closer look at the inner ear. I had one done almost 3 years ago. It does seem to fit some of your symptoms. It was my neurotogist that ordered the test. Do you have any of these doctors near you? They are a little more knowledgeable than an ENT.

Best,
Gloria

I totally know what you are going through, I have had pet for about 11 years now and its getting worse, I have seen many ENT's with no results, I am booked in with the apparent top ear man in Perth Australia in March, I am not taking no as an answer this time and want to find out what is causing this horrible thing..

It might be Myoclonus of the muscles that control the ET tube or LPR or anything.. It's not my weight I have put on heaps and its got worse..

I will try anything they have suggested in the past to inject fat into the tube or to scar the tube up a bit as the scar tissue may cause bulk... I will keep you informed..

I too am finding social situations and work quite difficult, I was shy to start with so this really doesn't help much...

Take care

Nicky (left ear PET)

There was a guy here a couple of mlonths back who also had PET. He was trying some Fanti-fungal treatment or pills and he claimed that the first time he has seen success. Do a search on PEt on this board, I am sure he will pop up...

I know how horrible it can be to have your eustacion tube constantly open like that... It is quite annoying and depressing..

Sorry about that... I guess we posted at the same time, but Petear is the guy I was referrign to... I thought he had some success as I remember his posts back when he was trying a new treatment.

Hi

Firstly I'm a Girl not a guy but I forgive you..

Yes I did seem to have some success, but that is the story of my life, I always think I have cracked it with a treatment but then it stops working.. eg Sound therapy seemed to work for about five months, and the anti fungal worked for about two to three weeks, but maybe it was just a co-incedence as my pet will go into remission sometimes, once for nearly a year and then it comes back, very very weird, I am at a lose I'm afraid...

Does anyone also get TMJ or clicking in their jaw on the same side as the pet? I do and when my pet is really bad I usually have a sore jaw too, I have been thinking of going to the dentist to get a splint fitted as I clench my jaw when I sleep.

Also do any of you press up under your jaw into the side of your neck to TRY to close the ET tube, I do and sometimes that works, for a while anyway, if I had to walk around all day with the tube open I would go insane..

Also incase you didn't know avoid diuretics completely, tea coffee green tea even decaff, it will make it worse, drink loads of water at room temp...

A couple of follow-ups:

- Yes, I also have a problem with tooth clinching and grinding. I've had it all my life. I wear a nightguard when sleeping to protect my teeth. There seems to be some connection between PET and tooth grinding and/or TMJ. Those who suffer from PET also frequently suffer from TMJ. I haven't verified this via any official medical journal. It's strictly my own observation from visiting the forums.

- I'm not sure if you're familiar with the House Ear Clinic in the Los Angeles, California area, but there are some doctors there that know a LOT about PET. I have an appointment on Wednesday. A 2003 paper written by one of the doctors there indicates success using a fat graft technique. Here is an abstract of a paper entitled "Autologous fat grafting for the refractor patulous eustachian tube":


The patulous eustachian tube (pET) presents a challenging management problem. Patients with the pET disorder are disturbed to the point of mental illness by their symptoms of aural fullness and autophony, especially the echo of their own voice. Thus far, described treatment methods are often temporary or ineffective. Here, we describe a minimally invasive method for the treatment of pET that involves cauterization with autologous fat graft plugging of the ET at its nasopharyngeal orifice, in conjunction with myringotomy and ventilation tube placement. This procedure has been successful for the treatment of refractory pET in 2 patients at the House Ear Clinic with at least 1-year follow-up and we propose that it may accomplish relief of symptoms by permanent stenosis of the ET. (Otolaryngol Head Neck Surg 2003;128:88-91.)


If this surgery works, I might be able to live a normal life again. I'd be happy to let me know how things work out.

David

Thanks for the info, I saw an ENT a couple of years ago who said he could inject fat into my ET tube, but that he didn't want to as it may do the opposite to PET and block the tube up and/or the fat would eventually be absorbed by the body..

So I decided not to do it at the time as he really tried to talk me out of it..

I am however seeing a new ENT in March and I am getting something done this time whatever it is, can't go on like this it's just crazy..

I hope one day all of us PET sufferers will live normal lives, it makes you realise how much you take, 'being normal' for granted...

Good luck

Petear

Hello all. I have PET also. I've had it for at least 6 years. For the most part is is always my left ear. Every day, I have the autophony, hear my breathing, hear my heartbeat sometimes. Many times, it goes on and off for hours. It's quite annoying. Ont top of hearing things I shouldn't, I can feel the warm air that should only come out my mouth or nose go into my ear, which I find really weird. I also have a whole in my ear drum. Literally, when I plug my nose and breathe in, I can feel air pass through that whole into my ear because the tube is open and shouldn't be. I sometimes have the PET in the right ear but very seldom. I've been referred to Dr. Poe but since he's going on sabbatical in July for a year, he's not taking any new patients. I'm waiting for my ENT to decide if I should see the doctor that Dr. Poe is referring people to. Maybe they are going to try to convince Dr. Poe to see me. I'm hoping that's the case. I really don't want to go see anyone else.

Please let us know how things go with Dr. Poe. He's the best in the business from what I understand, but if you read the research papers on the surgery he performs, you'll see that the success rate really isn't that high. Over 50% are dissatisfied. There are complications in many cases. Only a small fraction of patients consider themselves to be truly "cured."

I'm curious to know if you are a tooth grinder or have other jaw-related problems such as TMJ. I haven't seen any link between these problems and PET in the medical literature but anecdotally, the forum messages from PET suffers commonly mention a history of tooth grinding and TMJ. I'm a tooth grinder myself. My doctors and I are convinced that there is a connection.

I recently discovered that the NTI nightguard I was wearing for my tooth grinding is actually a very poorly built and dangerous product. I had been wearing it for well over a year and it has caused major damage to my bite. Of particular interest to this discussion, however, is the fact that after terminating use of this particular nightguard, my PET symptoms improved dramatically. I'm not cured by any stretch of the imagination, but the difference is significant enough to justify further research into the connection between jaw/bite problems and PET.

I have many doctor appointments lined up over the next few months. I'll let you know if any conclusions are reached.

I am commenting after reading a post on another thread. I made a commitment to myself: If this worked, I would try to reinforce this theory and try to get the word out to people suffering with PET issues.

I have been suffering with the symptoms that you describe for approximately 2 years. I stumbled across a post on a different web site that drew a correlation to PET and a probable sleep disorder. The post also correlated TMJ/Bruxing (Teeth grinding) and Acid reflux as common symptoms that commonly pop up with PET. I know this sounds strange but the logic that followed made a huge amount of sense. I will try to lay it out for you and to let you know that I had all of them. PET is only a final symptom of a journey of unintended consequences that got me to this point.

The logic goes something like this:

1.) Poor sleep (failure to transition through Stage 2 sleep to REM) can cause many health problems … in this case PET (Patulous Eustachian Tubes).

2.) Bad habits develop...Stage 2 sleep is where all of the bad habits develop. Most/All (as I understand) teeth grinding/teeth clenching/saliva swallowing/snoring/tossing & turning happens in stage 2 sleep. I did not even think I had a sleeping disorder... I seemed to fall asleep easily, but awoke easily. Note: If you stay in stage 2 sleep all nite, you have a sleep disorder.

3.) Bad habits lead to more bad habits: The teeth grinding causes excess saliva leading to Acid Reflux on an empty stomach. If your like me, you are probably on Prevacid or another PPI med ... getting off this will be another challenge.

4.) Unintended Consequences....The teeth grinding/clenching over conditions the jaw muscles which pinch the eustachian tubes. Installing/purchasing a nite guard only encourages more biting and saliva generation... something like a dog with a stick in it's mouth.

5.) The feedback loop starts ... The grinding and the Acid reflux keeps the poor paitent in Stage 2 sleep all nite.... and the problem gets worse .. if it is only in one ear, the symptoms will eventually spread into the other ear. My ears would also pop in an out during the day when under stress (clenching my jaw)

6.) The cure ... Quit grinding your teeth / shed the nite guard and get through stage 2 sleep as quickly as possible. Essentially let the jaw muscles, built up over the past 10 years chewing on my nite guard, atrophy.

I left the nite guard on the bed stand and began taking herbal supplement 5-htp which was recommended on another thread (designed to boost serotonin levels: I could just have low serotonin). It has been two weeks ... still can tell i’m grinding some, but the symptoms are beginning to fade. If you wish to search for the other thread, type "Patulous Eustachian Tubes and Bruxing"

Note: I am not a doctor and I am sure there are many holes in the logic, but it appears to be working. I went to many doctors (ENTs) and they all looked at me and told me there was really nothing they could do. I was convinced I would have to learn how to cope with this (PET) or go insane. Hopefully, I will not have to do either. It probably would not hurt any of us to go to a sleep clinic and validate some of this.

Good Luck, I think there is hope.
Jeff

Don't want to throw too much at you........but have you explored a perilymph fistula?

The syndrome you are describing sounds like Tullio's, where you hear your own voice. This is a classic symptom of perilymph fistula.

It is a tiny, microscopic tear in your inner ear which is easily fixed via surgery.

Just a thought

Todd

Don't want to throw too much at you........but have you explored a perilymph fistula?

The syndrome you are describing sounds like Tullio's, where you hear your own voice. This is a classic symptom of perilymph fistula.

It is a tiny, microscopic tear in your inner ear which is easily fixed via surgery.

Just a thought

Todd

Hi, Todd.

Thanks for the reply.

Perilymph Fistula produces symptoms such as dizziness, nausia, and hearing loss. I only suffer from the autophony. That, in addition to the fact that the symptom goes away when I put my head between my legs, strongly suggests a diagnosis of PET.

I *wish* I had Perilymph Fistula as it seems this would be much easier to fix! :(

David

Hi Jeff,

Excellent post. Thanks for the information. It appears that both of us are on the same track, identifying a link between PET and tooth grinding/clenching.

One follow-up question.


4.) Unintended Consequences....The teeth grinding/clenching over conditions the jaw muscles which pinch the eustachian tubes. Installing/purchasing a nite guard only encourages more biting and saliva generation... something like a dog with a stick in it's mouth.


Why would an overconditioned jaw muscle pinch the e-tubes? I thought the e-tubes were buried deep within the ear.

David

There was an interesting special on 20/20 last Friday (March 14) covereing various strange ailments - one of which seemed exactly as you describe - As it tuns out the patoent had what is known as SCDS or Superior Canal Dehiscence syndrome. The condition occurs if a hole develops in the tiny bone in the ear which in turn causes you to hear your own breathing,voice in your head, every little movement, etc.

The good news is that there is a cure - a simpe operaition to plug the hole - Dr. Lloyd Minor in the US is an expert in this field....

Research SCDS on the web and see if you feel it might be what you have....

Good Luck![/SIZE][/FONT]

I personally don't think it's SCDS as it wouldn't get better when you lie down or put your head between your legs, that happens because blood flows towards the head causing swelling which in turn closes the et tube untill you get up again that is...

contact Dr Poe, I wrote to him from australia and received a letter back.

I am going for laser surgery in australia by a professor who knows Dr poe and his work, the laser will cause scar tissue around the base of the et, and while they are there if the et tube is really gapping they will inject some fat too, but hopefully they wont need to, he did say this may take a few times to get it to work.. I too was told by other ENT's to put on weight which also didn't work, this Dr said that was rediculous to suggest such a thing to me, I'm not overweight but just right and have never had a huge weight loss..

Ear of Despair,

I know how you feel because I could write the very same things as you describe.

I got a tube put into my right ear, but after only a couple of weeks I'm finding it didn't really help - and I've got that annoying "white noise" ALL THE TIME.

I never knew these symptoms had a name until I spent one night Googling everything I could think of. I've had these symptoms for 1.5 years already and I can't image going thru the rest of my life with it...I'm too young at only 42 years old.

I'll be checking back to see if anyone has found a REAL cure.

Hi

I have had this for 11 years and it started when I was only 26, I have just had surgery - see my other threads....



Ear of Despair,

I know how you feel because I could write the very same things as you describe.

I got a tube put into my right ear, but after only a couple of weeks I'm finding it didn't really help - and I've got that annoying "white noise" ALL THE TIME.

I never knew these symptoms had a name until I spent one night Googling everything I could think of. I've had these symptoms for 1.5 years already and I can't image going thru the rest of my life with it...I'm too young at only 42 years old.

I'll be checking back to see if anyone has found a REAL cure.

I don't know if anyone has mentioned this, because honestly I only read your post and none of the follow-ups.

Good news my friend. I HIGHLY DOUBT that you are having any kind of eustachian tube disfunction to begin with. You are displaying CLASSIC symptoms of "Superior Canal Dehisence". The good news is, it can be repaired and you can get your life back!! During my diagnostic stage for 24/7 dizziness, it was suggested I may have this. Turns out I don't.

To get a proper diagnoses, you need to see Dr. Minor at Johns Hopkins in Baltimore, MD. I went to him because of the suspision that I had it. He is the doctor who actually discovered the condition. You'll need a high resolution CT scan (must be high resolution or you are wasting your time), VEMP testing, ENG, and an exam by Dr. Minor. The exam is very important and most ENT doctors do not do it, because they don't understand what to look for with inner ear disorders. Most cases of "eustachian tube disfunction" are simply allergies, SSCD, or migraine. All of these can constrict blood vessels to the inner ear or cause a pressure sensation.

You'll get better my friend!! I have something called MAV (migraine associated Vertigo). The treatment is much more unclear and still in its infancy. You have real hope! Good luck!

Rich