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    Old 05-24-2004, 09:20 AM   #16
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
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    Old 05-24-2004, 02:21 PM   #17
    maggie jane
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-24-2004, 02:36 PM   #18
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-24-2004, 04:46 PM   #19
    maggie jane
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-24-2004, 05:33 PM   #20
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-25-2004, 04:38 PM   #21
    maggie jane
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-25-2004, 05:10 PM   #22
    lib
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    Re: anyone with patulous eustachian tubes ?

    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.

    Last edited by lib; 05-25-2004 at 06:31 PM.

     
    Old 05-25-2004, 07:40 PM   #23
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-25-2004, 07:55 PM   #24
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    Re: anyone with patulous eustachian tubes ?

    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

    Last edited by lib; 05-25-2004 at 07:57 PM.

     
    Old 05-25-2004, 09:54 PM   #25
    chrisp72
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    Re: anyone with patulous eustachian tubes ?

    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.

     
    Old 05-26-2004, 05:03 AM   #26
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-26-2004, 05:32 AM   #27
    chrisp72
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    Re: anyone with patulous eustachian tubes ?

    Quote:
    Originally Posted by 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.

     
    Old 05-26-2004, 06:40 AM   #28
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-26-2004, 07:05 AM   #29
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    Re: anyone with patulous eustachian tubes ?

    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

     
    Old 05-26-2004, 07:29 AM   #30
    lib
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    Re: anyone with patulous eustachian tubes ?

    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

     
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