hi,
i know there are a few of you i have compared notes with, any one else with pet that can share symptoms? i have an appointment with dr. poe soon so i am also anxious to talk to others that have seen him as well. thanks lib

Hi,

I don't have anything new to say to you about PET, and I think I've already corresponded with you once or twice on these boards. I hope your appointment with Dr. Poe goes well. I recently wrote to him myself, and am waiting for a reply. I'm willing to travel across the country and pay a substantial amount of money if he can help me. I've had this for almost nine years. Have you heard an estimate of how much one of his E-tube treatments/injections costs? What do you think caused your PET? Please give us all an update after you see him. Good Luck!

JeremyR

hi,
i have no idea what could have caused mine, i am hoping by my history and an exam he will be able to give me an opinion. i had a sinus infection and after that a lot of strange stuff started happening, i also have all the predisposing factors, weight loss, tmj was on hormones and used sudafed. what did you say caused yours? how do you cope with this. i have problems with both ears. when people talk to you does your eardrum move to every word they say? do you know anything about his sucess rate? thanks, lib

Hi,

JeremyR again. I don't know what caused my PET. I had many ear infections as a child, and my jaw pops from time to time--but there must be more to it than that. How do I cope? Good question. For a long time, I was pretty obssesed with it, which is understandable when you consider how annoying PET is, and doctor after doctor can't find anything wrong with you. I was only 'diagnosed' two years ago, but I was convinced I had PET before this. As for now, my only relief is an estradiol nasal irritant-but I don't want to snort estrogen for the rest of my life. This is why I want to go see Dr. Poe. I wish someone on these boards who has seen him would describe a little bit about what he does, and how much he costs? What makes this guy so great? Is there some healthboards rule that doesn't permit this kind of information? My eardrum does not move like you described on your post. Once again, good luck and post any new information you find out.

JeremyR

hi, is it not a shame we know more than some dr.s. from what i understand dr.poe specializes in the e tube and treatment. not many know what he does and it would be worth it for you to have a consultation, it will only give you answers and options, i go the 6th of may and i pray he can put an end to this as i have problems with both ears and a snapping sound that comes from my face behind my nose when i talk. do you get that? lib

hi,
my appt with dr. poe went well, he is an expert in this and spotted my problem right away, he believes i had predisposing factors, acid reflux, and being thin, the sinus infection, and medications to help dry me up plus the wieght loss all togather kicked it in! lucky me, both ears.
i will start the same spray and i scheduled surgery, he will only do one ear at a time to see how i respond, i will be having the alloderm implant, he has been using this for about a year and it seems to be working.
so to answer your question about what makes him so great, he is the expert, he is brilliant and he knows very well about pet, go see him, you wont regret it! lib

I have been dealing with PET since April 1982--more than 22 years! First, it was just my right ear. Of course, I went through all the doctors, etc...no one knowing anything. I had so many surgeries that I have lost about 70% hearing in that ear. Nothing really helped--but somedays it was better. I had finally learned to "cope"-- sort of. Now it is starting with the other ear. I am devastated and just don't want to do it again. Someone please let me know about Dr. Poe and what he does. I just walked away from my job because I can't stand to be around people and have them talk to me--and as you all know--I really can't stand talking back. I just have to be alone to cope. Lib..your appointment was May 6th. Do you know anything now? Thanks so much!

hi maggie,
i have read all of your posts in the past and wondered how you managed all these years with pet, you must be very strong. my appt went well, i have pet in both ears, it seems they are not wide open but its there, this started last year for me and yes a multitude of drs and nothing so i went to see poe, he knew right away.
he is doing an alloderm transplant to narrow the e tube, it is tissue that your own body grows into or scar tissue will form. this is new he just started it last year. what are your symptoms in your new ear?
i am scheduled for surgery in august, i am scared. i have been using the estrogen drops but they really are not helping.
please write me back. you really should see dr. poe, hes the only one that can help you, you deserve it, you have suffered long enough. what job did you have? lib

Hi guys!

I have totally forgotten about this forum, but I'd like to know if any of you guys who are suffering of PET had found a cure?

I've had PET since I was 12, it started with a flu-like symptoms, the flu went away quick, however the crackling and popping noises didn't, I went to so many doctors and non were able to find out what was wrong with me, all of my tests came back normal, I kind of had given up looking for a cure since then and decided to live with it.

Now it's been almost 7 years with PET.
I was worried six months ago about flying(when I needed to fly) as I always feel the pressure changes on my ears even in small elevators.

My main concern was flying in an airplane, but through this forum I've discovered earplanes which saved me and made me get over my PET condition. :)

hi,
are you sure you have pet? other than popping and crackling what else do you get?
lib

lib,

Every now and then I get this feeling where my eardrums start playing along with my breathing, like when I inhale I feel my ears get sucked in, and when I exhale I feel like they get pushed out.

Also I sometimes feel as if my voice is 'capped' inside my head when I talk.

Those are my main symptoms.

oh by the way, I was not diagnosed by a doctor for my PET condition as most of the doctors that I've been to had no clue what PET is nor had the right equipments to diagnose me.

hi, yes this sounds more like pet, eardrums moving and on and on....how do you cope, i have surgery scheduled for august, i am scared and not sure what to do. lib

Hi Lib...Thanks for the reply...I'm not quite sure how I have coped all this time. I think on my right ear (the first casualty)--well, I had so many surgeries that they just about destroyed my eardrum. Also, there is a lot of scar tissue (thus the hearing loss). But, possibly the scar tissue is what has helped relieve some of the annoyances of the PET??? So, for several years--although it was still there--it was not nearly as bad as it had been--but I definitely remember ALL about the terrible times that lasted several years! Now, with my left ear starting this (sound of my voice in my head, ear drum moving with the slightest move of my head, sound of my pulse beating in my ear, and so on and so on...I'm sure you know it all!) I am just so afraid of surgery. Obviously, I can't afford any hearing loss in that ear-AND I am afraid of being worse off than I am. Sometimes I have "good days." Do you do that? Also, once I read about a surgery (and it might have been on these boards) and the person said after the surgery, the echoing subsided and they just had a feeling of "fullness" in the ear. Well, I have had that once--it was the worst thing I have ever experienced. I could not have dealt with that. I was leaning over cleaning a whirlpool tub (deep) and when I raised up, my ear felt as though someone had taken a pitcher of water and filled it full. I mean it literally felt like my ear was filled to over-flowing--but there was nothing in it. I nearly went mad. Fortunately, that only lasted an hour or so. But that was a symptom that I just could not do. There would never be any relief at all--even if I weren't talking. And the way I am now--the main annoyance for me is the sound of my own voice when I speak--you know--how it is inside your head and you hear from the inside--not the outside. So, what I wonder..is the surgery that you are going to have--if you feel worse afterwards than you do now--is it reversible? I guess I just haven't given up thinking "someday this will just go away." Can you believe I would still feel that way after 22 years? But what I have been experiencing this last week--well, I may have to change my way of thinking and do something. I know that I have read about Dr. Poe before. Can you give me info on him on these boards? Like full name and where he is? Thanks so much for the help--and mostly thanks for sharing your experiences. I can't believe you remember all my posts. I was ecstatic when I found this board a couple of years ago. It was the first time I had ever talked to ANYONE that really understood what I was talking about. Just that--it made me feel better. Maggie

hi maggie,
dr. dennis poe is in boston, if you do a search you should be able to find him, try google or even 411. this procedure is newer, he goes in thru the nose, and uses an alloderm implant to correct the area that open. its 3 hours under general. you know i also have this horrible snapping sound behind my nose when i talk, its the tube snapping open and closed.
i dont think this is reversible, its tissue so it grows into your body. from what i understand its pretty safe, it may not work all the way and you may need a touch up, i guess the idea is to build scar tissue to help keep the tube closed.
no i really dont have good days, its always there, i have not learned to cope with it yet and spend most of my time in reclusion, or searching the internet, this is destroying my life, family and job. you are lucky you were able to walk away from yours, i cant afford to do that and i have to talk at work. what kind of surgeries did you try? thanks, lib

Hi Lib: How many times have I read on these boards that this ear condition is destroying someone's life? I can always tell from the subject line when someone is devastated that they will be talking about PET... The surgeries I have had--in the beginning, of course no one knew anything. They kept putting tubes in my eardrum--many of them--thus finally destroying the eardrum. Then, I had a catheter inserted into the eustachian tube. That did not help either. Then, I had it removed. I think that is all. The catheter thing was the biggest surgery. Also, when I said I walked away from my job--it was for the day--not permanently. Although, I am thinking of leaving all together--I haven't done it yet. It's just that Friday was such a horrid ear day--I told them I had to go home. I just could not handle it. Sometimes, it just gives me the shakes and makes me so nervous that I cannot function at all and I just have to get away by myself. That's when I came home and got back on the healthboards. On my "good days"-- the condition is still there--but it is not quite as dominant. That is my concern about the surgery. I think that sometimes by ears are not as bad as some of the people on the boards--and that is why I have been able to cope--somewhat. Then, I have days like Friday--and I know that I can't do that every day. Thanks so much for the info on Dr. Poe. I know I have it somewhere--I will be so anxious to hear all about your surgery. Also, do you get any relief when you lie down? I did more (get relief) with the first ear than I do now. There are so many sides to this stupid thing! Well, I will be thinking of you and all the other people on this board today...I hope you have a "decent" day! Maggie

hi,
yes i get very nervous and i shake because of this, its the pits. i am also terrified of the surgery so i just dont know what to do.
i have talked to several people with this and some seem to cope and others do not.
i did meet a lady who has the catheders and it worked for her.
its so hard to know what to do. what do you do for work?
how does your husband cope with this? thanks libby

I am so afraid of the surgery. I guess that's why I have not pursued it more than I have. After my experience with the feeling of "fullness"==I knew it could be worse. Even lying down did not make that feeling go away. I work as a secretary for one of the directors in our public school system. We were really busy on Friday dealing with year-end stuff, teachers, etc. Sometimes I think that stress makes my ears worse. Or my ears make normal situations that I should be able to handle turn into things I cannot handle. As for my husband--he has handled this very well. I have explained to him so often exactly what is going on--he pretty well understands, even though he has not experienced it himself. I know he has to get so sick of dealing with me and my bad moods over this. He has been with me to doctor after doctor and always encourages me. We had been married almost 10 years when this happened. We also had 3 children--the baby was less than a year old. Guess he figured he had too much invested in me by that time to walk out! He knows, also, that it is best just to leave me alone when I am really having a bad day..just to stay clear. One time--when this first started--my ears were making so much noise that I screamed in the night. I had him sit up and put his ear next to mine and he could not believe it. He could actually hear the crackling and popping. He said, "I don't know how you deal with that!" I think that helped him to understand a lot. I know this has changed me a lot. I am not nearly as outgoing as I used to be and I don't laugh as much. I avoid people a lot of the time--and I used to love to be around lots of people. This condition is one that definitely reduces our quality of life. It just makes things tough. I try not to feel sorry for myself--but I do anyway sometimes. I want to get out and do fun things--but I know that if I do anything at all the least big strenuous--where I am short of breath--my ears will go nuts. So I avoid stuff like that. Even walking fast or jogging--no way! I have to "stroll!" Thanks so much for understanding. Maggie

hi,
my husband is understanding as well, i have a 9 year old also.
maggie are you noise sensitive?
i can not decide what to do but i cant imagine having to live like this either. do you ever get used to it? do you think they will ever find a cure?
i hope i can talk to a few more people who have had the surgery. do you think you will go and see him? thanks libby

My "child" that was less than a year old when all this started is now 23 years old... And, yes, I am noise sensitive to some noises. My dog (a 6 month Old English Sheepdog) when he barks is very loud. There is something about the pitch of his bark when he is on the left side of me--the ear that is messed up now. It probably would bother the other one also -- if I could hear out of it. I really would like to go see Dr. Poe. He is clear across the U.S. from me--but if I knew he could help me--I would go in a heartbeat (and, of course, WE know how quick that is because we can hear our hearts beating in our ears!) I want to give this ear a little time--maybe it will "settle down" some and I can deal with it. In the meantime, I would love to hear from everyone on this board that has seen Dr. Poe. I know that his name comes up quite frequently. Has anyone you have talked to had the exact surgery you are thinking of doing? With it being so new--I want to know about results from people who have had it-- and possible long-range effects. That may not be possible to find out now. Maybe I should start a new topic and put Dr. Poe's name in it to catch the attention. If we could just hear from other people. I think the chances of finding a cure now are much better than 20 years ago. At least this is recognized now by ENT's. Back then--they just ignored it. I won't give up hope. What do you think of posting a new topic and asking from everyone who has seen Dr. Poe? Is it okay to do that on these boards? Thanks so much. Maggie

hi, i am not sure if we can do that, i think it might be all right i have seen drs names on the tmj board.
i have met a guy who was the first to have this procedure he is happy, he may need it touched up, the idea is to build scar tissue to keep the tube closed.
i am hoping to speak with others. also there was nathan, he had the injection. i think he said it felt plugged and a little conjested.
i have no doubt dr. poe could help you, you should go to see him.
how long were you under for when you had the catheder? did it not help at all? why did you have it removed?
i also wonder about the patulend drops being held up by the fda.
have you read on them? should we start a thread? go for it. lib

Hi: When I had the catheter put in, it was with a local. They did not put me out at all..I could even talk to the doctor while he was working! I think it took about 1 1/2 hours. I had it taken out because it wasn't doing me any good. I haven't heard about the drops. What are they supposed to do? I would not like anything that made my ear fill plugged or congested. Why are you waiting until August to have the surgery? Is Dr. Poe that booked up? Maggie

hi,
so i guess you do not recommend the catheder. i know one women it did work for.
that was the soonest i could get an appointment, so yes he is that booked up. its so hard to know what to do, i have it in both ears, the right side makes a snapping sound when i talk, others can hear it also. its very disturbing, he said its the muscle in the tube.
do you ever get use to pet? it controls my life! i just dont know. can you ever get use to the moving eardrums? the drops are by a dr. in california, ear foundation has the info.
what did the surgeon in ok city tell uou last? thanks, lib
i think the plugged would be better than hearing and feeling the eardrums move for me, plus it would help with the sound sensitivity.

You know...if I were you..I would probably try the catheter first. The doctor in OKC told me that I was one of the only people he had ever done that surgery for that it did not work. It is a relatively simple surgery--outpatient--and if it does not work--it is completely reversible. It definitely did not hurt me any--it may have helped some--but I wanted more. For you, it may be just the thing. I don't have the snapping sound when I talk. I definitely do have the eardrums moving. Just the slightest move of my head and they move. It's kind of like a wind tunnel or something. Now, in the ear that I can't hear out of (with the mutilated ear drum)--it doesn't move. I have actually gotten used to that--I don't like it and I still notice it. But I can tolerate it. It's the autophony (I think that is what it's called)--the sound of my voice in my head when I talk that I can't stand. And I think that if my ear were plugged up--it would be worse. It's not the catheter surgery that messed up the eardrum. It's all the other stuff they tried first--and I think I may have gone to some not-so-good doctors...I saw the doctor in OKC last summer. I won't see him again. He's way too old now and I was disappointed. I don't think he should be seeing patients any more. He did clean out my ear (the one that is just now effected)--and that helped a lot--I am so careful..I never put anything in there. I just cringe if any doctor even tries to look at my ears for just a check-up. It's like--just leave them alone! Some days I think I tolerate better than others. I think that I probably am a little used to it..but I know what you mean that it controls your life. I can think back on different places I have been (parties, etc.) in the last 20 years--and what I remember is just how bad my ears were on that particular day. It's pretty bad when that is the memory that I have. But, I have had times that I really haven't thought about it. That is why I don't know for sure if I am somewhat used to it. If I think about it--I know it hasn't gone away. And when they are really bad--I know it and I can't forget about it at all. Like I said--I just have to be by myself and not talk to anyone. I am so glad that I found these boards so I can share my thoughts with people who know--but I also feel really bad for you because I know what you are dealing with. I am assuming that since you have a 9 year old--you are quite a bit younger than I am. But this started for me when I was 29--I would not have wanted anyone to tell me then that I would still be dealing with this so many years later. But, I have managed--and the doctors are beginning to find more & more things to try. So, hopefully, you won't have to put up this for much longer. Do you get relief when you lie down? How about when you sit and hold your head down--like between your knees? That sounds dumb, doesn't it--but it kind of helps. Let me know. Maggie

hi,
i am 33 and this all started at the end of last summer.
i have met one women who had the catheders done under general and it worked for her. 2 other guys i have come across it did not help.
i will ask about them, i wonder if theres were different because they went under general.
the snapping is the tube behind my nose, i dont know if the catheder would stop that or not.
i will think about it some more, how long did it take to heal from the surgery for that?
do you know anyone else its helped? i think if it were that good dr. poe would be doing it also. i think he is trying to make the tube function normally again.
its so hard, so you went out to parties, i have not been anywhere, i am homebound till i figure this out, thats not good either.
look up shea ear clinic and read there tuboplasty and see if its the same as what you had.
hope we find a solution soon! lib
yes when i bend over my ears pop and the snapping stops, but laying down does not help so much. lib

Hi All,

Sorry to butt into this but after reading I couldn;t help think that maybe PET is what I have, I have been looking for answers for about 5 months now.
My Symptoms are:
Started with a upper respitory infection.
started having some mild off-balance feelings.
chronic clicking in both ears, when talking, chewing.
I get what seems to be fluttering of left eardrum. Like something is hitting it from the inside.
When I yawn sometimes my ear sounds like a creeky door opening..
Also get a lot of post nasal drip, very thick and hard to clear.
Have had Sinus CT scan, nothing major showed up.

I still have mild off-balance feelings and the chronic clicking, I have tried all types of drugs etc. but none seem to have helped.

Does this sound like PET?
Any info would be greatly appreciated.

kind regards

Chris.

hi chris, this is how mine started last fall after a sinus infection.
does it sound abnormal when you swallow? mine pop alot and it sounded like there was styrafoam in them when i would yawn. now its worse.
does your voice reverberate in them? that did not start until jan for me.
i had dizziness and motion sickness in the fall as well but that is now gone.
maybe maggie can give her opinion also.
lib

hi chris, this is how mine started last fall after a sinus infection.
does it sound abnormal when you swallow? mine pop alot and it sounded like there was styrafoam in them when i would yawn. now its worse.
does your voice reverberate in them? that did not start until jan for me.
i had dizziness and motion sickness in the fall as well but that is now gone.
maybe maggie can give her opinion also.
lib

Hi Lib,

Thanks for the reply, when I swallow i get the clicking and popping but not always. I don't have any voice reverbaration (yet). I've been trying to find a way of explaining the ear noise when yawning, Styrafoam is a good example, didn;t think of that before. I still have the off-balance, after 5 months, how long did it last for you. I can deal with the clicking, popping and crunching but not the constant off-balance.. I have been to a ENT who
is convinved it is sinus related. She didn't offer to do any more tests etc. But since I'm still feeling pretty bad I think I will get a second opinion. She did tell me to use a seawater nasal spray, but I find after using this it makes me more dizzy.

Anyway wishing you the best
Chris.

hi,
dizziness was only about 2 months, then it was gone, they think i mayhave had an inner ear infection, along with the sinus infection, and that plus the wrong meds and wieght loss kicked in the pet.
i would definatley get a second opinion, where do you live?
do your eardrums seem to move when you talk or cough?
can you breath air up into your ears if you breath in deep?
lib

Hi....First of all...Chris...you are not butting in at all. That is what these boards are for. To share all of our information and try to help each other. Sounds to me like you may have PET--but I have found that the one common thing that we all have (with PET)--is the sound of our pulse beating in our ears--and the sensation of talking inside our head rather than out. We hear from the inside--not outside. This is just our own voice. The other things are symptoms for some--but not all. Mine started with an ear infection--and then probably wrong medicine and weight loss. I always describe the noise as cellophane paper rattling. \
Lib...I hadn't thought about it but I bet you are right. Since Dr. Poe seems to specialize in this--I bet he would be doing the catheter if he had good results. My doctor was more interested in treating deaf people and doing ear implants than he was with this disease. Also, when my ears were at their very worst--I did not go anywhere. Only went out if I felt I could tolerate being around people. Many times we made an early exit from wherever we were. I just had to get home. As for healing from the surgery--almost immediately. Never any pain--no incisions (they go through the ears)..leave the hospital within hour or so after surgery. I looked at the Shea Ear Clinic site and could not find where they talk about this surgery. Must be looking in the wrong spot. I am going to look up another place that I read about--I think it is in Memphis or Nashville. When I find it--I will let you know. The first time I read it--I cried--because these doctors were talking about exact symptoms that I have. I will let you know. Maggie

hi,
maggie look up shea its in memphis, it is under eustachian tuboplasty, its a procedure that is done under general. there is also a dr. who said they sew the tube up a bit at george washington uni, in dc i had never heard this before either.
also, my defects in both tubes are small so i dont get the heartbeat unless i lay down or turn my head a certain way or bend over, i also only get the air in and out when i breath deep or am talking, i think the severity depends on how open the tube it.
thats where i dont understand how a catheder would work that well, its where the tube is staying open that needs to be corrected.
its so hard and so confusing.
and maggies right, anyone who wants to jump in is more than welcome.
lib

Okay..I found my information that I had. Guess what! It was the Shea Clinic in Memphis. It was John J. Shea. When I put in "Shea Ear Clinic" I got a Shea Ear Clinic in Texas with John P. Shea! Anyway, I re-read all the stuff about tuboplasty. That is the article I was talking about. It was the first time I had seen the symptoms described by medical people so perfectly! I think the tuboplasty is similar--but not exact. This clinic sounds so good. I have actually contacted them. That is why I have all the info. They have hotels attached to the clinic where you stay while you are an out-patient. I think you should give it a try before doing the permanent surgery. (just my thoughts)--but this guy seems to know what he is talking about. I will be contacting him again--if I don't get some relief soon. Also, since he is so good--I bet he knows of Dr. Poe also. It's kind of nice to compare notes between doctors, too. Especially when you feel they are both good doctors.

hi maggie,
you know its tough, my husband and i keep thinking that if that were the best thing poe would do it also. he uses tissue so its natural. i have met one women it worked for and two guys it did not. i think it really depends on how open the e tubes are. and i wonder with that in there are you more prone to infections.
what does your information say about the procedure? did you call and ask them for it?
i wonder if that would stop the snapping in my face.
its so hard to know what to do, are you going to call them and get information, does it say its under general? thanks lib

Hi Lib...I have e-mailed Dr. Shea in Memphis. I am so hoping to hear back from him. Last night was not a good one--we had some people come over and they kept talking and I finally just had to excuse myself and go upstairs to bed. You know, after a while, the sound of your voice in your head (besides being so annoying) gives you a headache! Anyway, I have asked Dr. Shea about his surgery (tuboplasty) and also if he knows of Dr. Poe and his surgery with the scar tissue. I will let you know if/when I hear back from him. Maggie

hi maggie,
i hope they do email you back, i emailed in feb or mar and never got a reply. i posted a message on the ear foundation board also, you should look it up and find my post, it will give you my information.
i talked to my neurotoligist this morn and he seems to think that the alloderm implant is a better option. i am going to find out more on the injections when i talk to the dr. let me know what you find out. i am not sure if you caught what i said about the dr. in dc but he said they sew the tube closed a little. i had never heard of that, what do you think of that. lib

So the alloderm implant is an injection? Are you having Dr. Poe do it? Did you find out for sure that it is irreversible? No, I haven't heard of sewing the tube partially shut. That sounds to me like it would only "partially help???" I would think either of the other 2 options makes more sense??? However, at this point, I am grasping! Maggie

hi,
no the alloderm is put in surgically, it is not reversible. the injection is what nathan had done, if you search the old posts he explains what that is.
the alloderm is tissue put in to close the open area. did you go to the ear foundation support group and look up my post, it has my info on it.
its so hard to know what to do, i wish i could foward you some info. lib

Hi Jeremy, lib,
thougth I'd just check in because it's been a while. I'm still in the same boat too? I'm living my life though, I reach a crisis point with my PET roughly every 2 months and then I start the coping cycle again.
lib, do you reckon that it's a bad idea to take the birth control pill if you have PET? I don't know whether it's safe or not. I read that hormone treatment can cause it at some stage during my research but I've never had a doctor confirm that. You must have seen poe by now, how did you get on? I've been thinking about visiting the shea clinic.
I thought I'd mention as well that I've been trying acid blockers for the acid reflux thing that apparently can cause it, I was also thinking of trying a mouth guard to wear at night because I grind my teeth and I was wondering if I could have TMJ.
lots of love to you both,
aja

hi aja,
i was on depo provera but poe did not think it was a problem, he did say acid reflux could cause it along with other things, he said tmj was a seperate issue.
i am having surgery on my right ear in august, he is a great dr. and i recommend him highly. when will you go to shea?
hugs, lib

Hi lib, hope you're still there, i just got your message..
I'm planning to go to Shea when I can afford it really. Sounds like you'vr got confidence in Poe which is fantastic, I so hope it goes well. What surgery are you having done?
What's depo prevera? is it an oral contraceptive pill?
What I really want to know about the whole acid reflux thing is if once the damage is caused by the acid can it be reversed by taking acid blockers? or has the tissue been burned away in which case it's important to address the acid reflux in order to stop it getting any worse?

hi,
depo is the birthcontrol shot. acid reflux can cause pet, taking the meds will help but not reverse it, the damage is already done. i am having alloderm and cartlidge graft, my tubes are not wide open the defects are small so i am praying it takes care of it.
did you have acid reflux prior to pet? mine was caused by a combination of things, acid reflux was one of them, sinusitis, all the meds,wieght loss.
why dont you go see dr.poe? what happened to cauterizing the et?
hope this helps, lib

Hi to everyone! I am a new member -- I just discovered this site after having PET since the beginning of March. What a relief to find other people with this aggravating ailment! I am pretty certain what caused mine -- I had sinus surgery in Feb. -- my fourth! I have had severe sinus disease for 12 years -- no taste and smell. Well, the good news is that the surgery was great for the sinuses -- I taste and smell every day now! The bad news -- according to ear specialist I saw -- is that now that the congestion of 12 years is gone from my head, it allowed, or caused, the ET to spring open. I have all the same symptoms all of you have discussed -- the absolutely maddening sound of my own voice inside my own head, and the sound of each breath in and out. (Although I don't have the popping Libby has described..) It has been so awful, because I teach for a living. When it first began, a couple of months ago, I thought I was going to lose my mind -- every class was torture. But -- I'd like to offer two things. First, has anyone else tried earplugs? They work a little -- although it's a trade-off. They muffle the sound of your own voice a bit, but then outside dounds are also muffled a little too. It depends, I guess, on the individual and their perceptions and symptoms...Anyway, if you try it, I'd recommend the soft type of earplugs, not the real heavy-duty ones for swimming -- the soft ones at least let in some sound from the outside. The second thing I'd like to offer is for everyone who talks about being a recluse -- hang in there! I felt that way at first -- I didn't even want to say "Thanks" to the sales clerk. But without minimizing the difficulties of this, it helps me to think like this: millions of people would trade what they have for PET! Really! Whenever I get aggravated, I remember what other awful diseases I could have. I'm also thankful that I spent 45 years without it! I have 2 kids, 12 and 14, and a part-time job and a husband and a house to keep up, and even though PET has diminshed the quality of life for me a little, I'll be darned if I'm going to let it ruin it. We need to decide how much we're going to let PET run our lives. I hope I'm not sounding too Pollyanna-ish, but I really think that while we can't control the aliment, we can control how we view it. Hope this helps someone -- LynneR

hi lynne,
sorry to hear another victim of pet. do you have it in both ears? i do, its miserable. i also work with people all day and it makes it even harder.
where do you live? you are lucky the ear specialist you saw knew about pet, most dont have a clue.
i do not cope well with this and it started last fall for me. i am going to have surgery to try to correct it in august, i am scared but i know i am in expert hands when it comes to pet. i actually pray constantly that my appt will get moved up. i admire your strength in dealing with this.
do outside noises bother you also? thanks lib

Hi Lib -- No, I just have it in the left ear. I'm not sure what you mean by outside noises -- I guess that means they don't bother me! I saw an ear specialist at UPenn in Philadelphia who diagnosed it right away -- but you're right, I saw two ENT's prior to this UPenn guy who didn't have any idea what it was. The UPenn also recommended Poe in Boston as the only person who's really doing any work with different types of et dysfunction, but I think I'll sit tight for now. Boston is a bit of a trip for me.....It is depressing that there don't seem to be any easy treatments for it -- you know, they can send a man to the moon and all that!...I wouldn't worry about the surgery -- I heard Poe is really good -- I'll be interested to hear how it works for you -- maybe if I hear good results, I'll try it!

hi,
yes, i drove from virginia to boston, it was a hike. dr. poe is excellent, i trust him with my life, i am not afraid of him its general anesthsia that scares me, i have never had it before. dr. poe is brilliant and if you ever decide you want help go to him, he takes his time and tells you exactly what the problem is.
how do you cope with this, its hard to ignore. thanks, lib
oh...outside noises, like dishes and loud voices, do they bother your pet ear?

hi everyone, also does anyone else find on the phone, with the receiver to one ear the other ear reverberates to the person talking?
i hate that! thanks lib

Lib -- Gee, I'm in Jersey, so it would be not so bad a trip for me to Boston, I guess! I will be anxious to hear how you make out. As far as general -- really, it's nothing. I have had about 8 surgeries -- 2 colon, 2 knee, 4 sinus -- and after some, you can wake up and have a sandwich! It's probably true what they say -- you're in more danger driving to the hospital than having the surgery!

Also -- I get some relief each morning -- the tube is closed for the first hour or so after I get up. From what I understand, that's the time it takes for the blood that pooled there overnight to drain downward and allow the tube to pop open again. I also get relief when I have a glass of wine -- from what I understand of this, alcohol dilates blood vessels, so it creates some congestion around the tube and closes it. Also, when I bend over, it instantly goes away (this, I hear, is a classic symptom of PET) -- again, the blood helps to close the tube. I also get about 10 or 15 minutes of relief after eating -- I guess it increases blood flow to the area. Do you find all of this, too?

So I do get periodic breaks; also, I only have it in one ear. So these things help me to tolerate it somewhat. I do know the frustration -- I have had moments when I think, "I'll be like this for the rest of my life.", and I actually feel a little panicky. It's like I'll never feel like myself again. But by and large, as the months go by, I have been dealing with it a little better -- first, the earplugs do help a little to mask the sound of your own voice from inside. But it's also a lot of head work and mindset; I tell myself, Well, so now I have PET. I've had ulcerative colitis, and early-onset arthritis, and 12 years of sinus disease -- and I've survived everything so far. PET won't kill me, and it will only make me as miserable as I allow it to. I think it really helps to accept PET as my new reality (but, as I said, I only have it one ear, and you have two, so that's tougher...) but still, there is some peace that comes from saying, I'm not going to rebel against this anymore....But! -- I'll always keep an eye out for new treatments, and if you are successful with Poe, I would put that on my list as well. It's just that I'm done with letting it ruin my life in the interim... No, I don't get the phone problem...Keep your chin up! -- Lynne

hi,
makes me wonder why i get the phone thing, i wonder if i have something else going on also, hope others will say if they get that.
yes having it in both ears makes it harder.
some of the things you said do help, but i have symptoms all day, and even when i lay down, a drink or two helps.
do you have acid reflux at all?
i also get a snapping sound in my nose from the tube opening and closing, others can hear it, its very disturbing. so what did you hear about poe?
he is much closer for you, i really like him, hes a great dr. and easy to talk to.
i am not sure why i get some of the other ear symptoms i do, i hope theres not more to this. thanks, lib

I don't have acid reflux...I can hear the tube popping open and closed, but it doesn't bother me too much. My doctor at UPenn recommended Dr. Poe, and said he's the only one doing work with et dysfunction, and that he's very good -- I'll be so anxious to see how you make out after the surgery! For me, the ear plugs help so much that I guess I can stand it for the time being...you have to buy the soft ones, and I cut them into thinner disks, because they come so big! -- but if you fit it snugly into your ear, and try to close the edges around your ear, it cuts down on the sound of your voice (and the breath sounds) significantly. If I hear of people making out well with Poe, I'd first have to check if he's in my PPO...and even though I'm closer to him, the distnace is off-putting for me, because then you're talking gas, and hotel, etc....If he were in NYC or Philly, I'd probably have been to see him already! (Funny, because he probbaly has people from across the country who fly in and see me as being close by!) It really boils down to level of distress, and I guess for now, I'm in a holding pattern, because the earplugs make it tolerable....keep me updated! -- Lynne

hi,,
oh yes, they come from all over the globe to see him, i am going to go broke going back and fourth but this is ruining my job, family life, social life and on and on, so we are going to do what ever we can to get this fixed. i find it very disturbing, the snapping in my face is horrible, but i like your attitude and strenght, i need to hear these things. stay strong and keep checking in i need the support. how do you deal with the moving ear drums? lib

Hi Lib! Well, I did not drop off the face of the earth. I have had a cold--and--like most people with PET--that brings about some relief--so I have tried not to think about it so much. Wish I could keep this cold (and the swollen sinuses) forever! AND, I did get e-mail back from Dr. Shea. He was very kind and said to make an appointment because he felt he could help me. As usual, I procrastinate--because of my fears. I will let you know how things go. Maggie

hi maggie,
i got the same e mail back from shea. i wrote back asking about risks and never heard anything back on that. i am sticking with my wonderful dr. poe, i had a wonderful phone call and letter from him and i am putting my faith in him, he is a very kind, brilliant doctor and i know he can help me, he knows all about pet and the best ways to address it.
are you going to go to shea?
good luck, lib

Hi Lib....you know...in my e-mail that I sent Dr. Shea--I did ask several questions regarding risks, if it was reversible, etc...and he did not answer those. I just don't know what I'm going to do. I am so anxious for you to see Dr. Poe again. Everything I hear of him is good. I will be eagerly awaiting your news. Let me know when you talk to him again. I always think of you regarding all this "stuff!" Maggie

hi maggie,
you know you probably got the same generic e mail i did,
i have more to tell you i just dont know what i can post. if you go to the [ removed ] and look at the posts you will find mine and it has contact info and i could tell you more, please do that.
lib


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