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  • anyone with patulous eustachian tubes ?

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    Old 04-13-2004, 07:51 AM   #1
    lib
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    anyone with patulous eustachian tubes ?

    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

     
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    Old 04-13-2004, 05:08 PM   #2
    JeremyR
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 04-14-2004, 04:12 AM   #3
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 04-15-2004, 08:24 PM   #4
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    Re: anyone with patulous eustachian tubes ?

    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

    Last edited by JeremyR; 04-15-2004 at 08:25 PM.

     
    Old 04-16-2004, 11:15 AM   #5
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-09-2004, 07:57 AM   #6
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-21-2004, 09:34 AM   #7
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    Re: anyone with patulous eustachian tubes ?

    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!

    Last edited by maggie jane; 05-21-2004 at 09:35 AM. Reason: spelling error

     
    Old 05-21-2004, 10:44 AM   #8
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-21-2004, 11:07 AM   #9
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    Re: anyone with patulous eustachian tubes ?

    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.

     
    Old 05-21-2004, 11:16 AM   #10
    lib
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    Re: anyone with patulous eustachian tubes ?

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

     
    Old 05-21-2004, 05:21 PM   #11
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    Re: anyone with patulous eustachian tubes ?

    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.

     
    Old 05-21-2004, 05:38 PM   #12
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-22-2004, 02:24 AM   #13
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-22-2004, 06:17 AM   #14
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-24-2004, 08:43 AM   #15
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    Re: anyone with patulous eustachian tubes ?

    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

     
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