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    Old 08-20-2007, 02:29 AM   #1
    Remmy
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    PET: management and surgery

    Hi all.

    Here's a new thread about PET and related issues.

    Bye, Remmy.

     
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    Old 08-21-2007, 02:06 AM   #2
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    Re: PET: management and surgery

    Hi Remmy, thanks for opening this thread.

    I hope others will join us too.

    A doctor once suggested obliteration to get rid of PET.

    I wonder if someone had it done, and could tell us about it.

    bye bye, take care,
    Helena

     
    Old 08-21-2007, 04:56 AM   #3
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    Re: PET: management and surgery

    Hi, I'm new here. I hope this is the appropriate place for this question.

    I am wondering if I have PET or no. I have total deafness in one ear for 10 years as a result of AN surgery. Until recently I had 'perfect' hearing in the other according to tests and my own perception. One day in June I started getting some echoing of things like road noise in the car, I thought the tires were making noise. The next day, I started having trouble hearing clerks in stores and the next evening the voices of commentators on television were distorted and I had trouble understanding DH. Meanwhile my own voice echoed with a sound like someone blowing into a microphone. With each syllable I said, there was a simultaneous noise that was sometimes fairly quiet (no way normal though) and sometimes so loud that I could not hear my own voice. This thing with my own voice started to make me crazy and I learned to speak quietly.

    I was treated with prednisone and decongestants by an Urgent care dr within days of this happening. No improvement. I went to my oto dr within about 5 days who said I was not congested but continue with the steriod coarse. He also gave me diuretics and suspects to this day that it is early Meniere's due to the curve of a mild hearing loss I have (low freq and very high freq). Neither of these helped. Nothing has changed since June. I've been back several times and my hearing is stable according to tests. He sees (audiogram) my hearing loss as mild. To me the distortion and echoing of my own voice are devastating. Music also does not sound good anymore. Low notes on a guitar sound like the string is so loose it almost buzzes rather than music. The echoing goes back and forth all day long especially sensitive to air pressure I think as I notice continuous flucturations as I drive up and down hills in this area.

    I read about PET and asked the ENT to confirm or not. He did not see movement in my eardrum but said that did not rule it out. He still suspects Meniere's but prescribed the Estradil nose spray to see if it helps.


    What I wanted to know, is those of you who know you have this, do you also have distortion of sounds coming in from the outside as well as your own voice? This makes me doubt that htis is what I have but the echoing of my own voice sounds like what I read here.

    I apologize for the longwinded post. I am grateful for any light you might shed on how this feels from the inside and whether my distortion of other sounds rules it out.

    Thanks very much.

     
    Old 08-21-2007, 06:53 AM   #4
    Remmy
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    Re: PET: management and surgery

    Hy Myrtle59.

    I'm not a doctor, as you can imagine.

    As far as I know, distortion of external sounds (I mean sounds that are not produced by your own body), should not be related to PET. At least, that is what I read in a paper by Dr. Dennis Poe (one of the master ENT's in eustachian tube diseases).
    Anyway, I was told by Dr. Oskar Kujawski (another master ENT in eustachian tube diseases) that PET may lead to external sound corruption. This is what I understood: when an eustachian tube is PROPERLY closed, the pressure of the middle ear gradually gets lower and lower, due to the fact that middle ear tissues reabsorb some gases; as a result, the drum is partially "sucked in" and is slightly tense, so that it can vibrate correctly with external sounds. When the e-tube is patent, this mechanism is interrupted and the pressure of the middle ear does not get low enough, so the drum is slacker and does not vibrate properly, which may result into external sounds resembling sounds coming from a broken loudpseaker.
    It's a kind of hyperacusis.

    So, autophony + external sound distortion may be symptoms of PET.
    What is missing here is breathing autophony: do you hear only your voice echoed or your breathing as well? It is not a must: you may be PET affected even though you do not have breathing autophony, but usually this symptom shows up with PET. In case of voice autophony alone, also Superior Semicircular Canal Dehiscence Syndrome (SSCDS) should be taken into account (Dr. Poe highlights that SSCDS and PET may be confused).

    [url]http://www.bcm.***/oto/grand/11_06_03.htm[/url]

    Bye

    Remmy.

    Last edited by Remmy; 08-21-2007 at 07:03 AM.

     
    Old 08-21-2007, 07:18 AM   #5
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    Re: PET: management and surgery

    Thanks Remmy. I do not hear my breathing or heartbeat. The only possible time might be that while walking uphill exerting myself breathing through y mouth, I have experienced the loudest echoing of my own voice. It was so loud I could not hear my words as I talked to my friend. However, I could hear my friends voice clearly without noticeable echo.

    Should my voice sound louder or softer if I close off my hearing ear? Mine is louder. Is that the normal case?

     
    Old 08-23-2007, 01:19 AM   #6
    Remmy
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    Re: PET: management and surgery

    Hi Myrtle.

    Could you try to provide a more detailed description about how you hear external sounds, please?

    Also, what would you describe how you hear your own words? Is your voice loud and muffled, or is it loud and "blaring"?

    If I plug my ears, I can hear my voice louder and even my steps, but they are muffled..... I think it is normal, even in people without PET. Maybe, when I was PET free, I could not hear my steps with my ears plugged, but I can't be sure right now.

    Concerning eustachian tube obliteration, I've just found this paper:

    [url]http://www.aans.org/education/journal/neurosurgical/jun03/14-6-3.pdf[/url]

    It is not strictly related to eustachian tube obliteration but, as far as I understood, obliteration of eustachian tubes is a part of other surgical procedures meant to cure other diseases. Anyway, it looks like obliterating eustachian tubes is not a new thing in head and neck surgery.

    Let me have your opinion about the paper, please.

    Bye

    Take care.

    Remmy.

    Last edited by Remmy; 08-23-2007 at 01:26 AM.

     
    Old 08-23-2007, 08:35 AM   #7
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    Re: PET: management and surgery

    I would say my own voice itself may be normal (hard to say) but simultaneously there is a muffled sound like blowing into a microphone that accompanies each syllable. Sometimes it is much worse than others. The most simple example is clearing my throat. I hear the normal sound and at the same time a loud blowing into a microphone sound echoing it. Since they happen simultaneously when it is very bad I have trouble hearing my own words and knowing how loud I am speaking. The more quietly I speak, the less the muffled echo.

    As for incoming sounds, that also varies. Sometimes men's voices sound like they are coming through a broken speaker, sometimes slightly so, sometimes especially newsmen on tv so bad I have trouble understanding. Sometimes the frequency that is being distorted shifts and men's voices are pretty near normal and women's voices including my own sound like two people speaking at once, just slightly a tone a part almost like a chord.

    I tried the nose spray. The symptoms immediately went to the worst of the rante I experience. I woke up in the middle of the night and thought I heard my breath and heart beat for the first time. It was very scary. I turned over and it went away. I have not tried it since.

     
    Old 08-23-2007, 10:13 AM   #8
    myrtle59
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    Re: PET: management and surgery

    Maybe this explains it. If I say the word mentor, the first syllable has that muffled echo and the second syllable less so. The m's and n's are always bad. The intensity of the problem changes back and forth all day long usually worsening overall as the day goes on.

     
    Old 08-25-2007, 06:06 AM   #9
    Remmy
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    Re: PET: management and surgery

    Dear Myrtle.

    I think that it is very likely PET or at least that you have PET-like symptoms. I'll tell you why:

    1) You hear your own sounds and "at the same time a loud blowing into a microphone sound echoing it" (these are your words): this additional sound should be the one that reaches your eardrum through your e-tube and the echo effect you perceive could be a result of the fact that the sound you produce reaches the drum twice but in two different times: once through the normal acoustic path and, again, through the e-tubes (in fact, the two paths are different in lenght). This is typical of PET.

    2) M's and N's make your e-tubes open more than other sounds, that's why you have the strongest echo with that. Also this is typical of PET.

    3) You hear icoming sounds like "they are coming through a broken speaker" (your words). This happens to me as well, once in a while (I have a very slight PET). There may be two reasons why PET leads to this "broken speaker" symptom:
    - FIRST: the one I told you in one of my last posts, about the drum that is slacker than normal when an e-tube does not closes properly. A slack drum does not vibrate properly and you may experience a "broken speaker" effect.
    - SECOND: also incoming sounds may reach your drum twice: through you external ear canal and barely through you e-tubes that is less likely to open with external sounds, so you ear the external sounds completely through your ears and "rapidly sliced" through your e-tube (as it rapidly opens and closes, letting the sounds pass and then blocking them), which may result into the "broken speaker" effect.

    Anyway, you really have PET like symptoms.
    Dr. Poe may be the one to rule out. Remember that SSCDS is also a reason for autophony.

    Bye

    Remmy.

    Last edited by Remmy; 08-25-2007 at 08:19 AM.

     
    Old 08-25-2007, 07:28 AM   #10
    myrtle59
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    Re: PET: management and surgery

    Thanks very much for the information. What you have told me convices me that the distortion etc are more likely caused by a middle ear problem than Meniere's. I think my slight hearing loss is either inability to do the hearing test properly because of that or co-incidentally just showing up now but caused by an illness last year but confusing the issue for the dr.

    As of today I have the sound of fluid shifting in the left ear (hearing ear) when I shake a thermometer in the right hand. Glasses clinking sound very loud to me and I have a sensation of heat and discomfort in that ear. I don't know if this is new due to trying the estradriol spray (once only) a few days ago - some things started happening then - or just more of what's going on or what.

    I think I need re-evaluated for the big picture. If Dr. Poe were closer I would be calling him Mon. As is, I will try to at least get a diagnosis locally but if it is not sorted out to my satisfaction I will contact him before all is said and done.

    Have you consulted Dr Poe for your situation? If so, what was he able to do to help? Do you consider yourself 'cured' of the symptoms of PET?

     
    Old 08-25-2007, 11:07 PM   #11
    Remmy
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    Re: PET: management and surgery

    Hi Myrtle.

    I have not consulted Dr. Poe since I live in Europe, where Dr. Kujawski (a very valuable ENT in the field of eustachian tubes diseases) visited me in Geneve.

    [removed]

    He helped me to find out the reason behind my PET, which is a blind acid reflux from my stomach to the back of my nose (it is called a LPR, which means Laryngo Pharyngeal Reflux).

    Corticosteroid nose spray + acid (H+ pump) inibitors is the cure, aiming to stop PET evolution, but it is very unlikely to revert back my tubes to normality.
    Fortunately, my PET symptoms are very very mild and, as a matter of fact, I never suffer from real autophony. Nevertheless, I know all the symptoms very well, since I had each one at least once (even slightly) and I do understand how they are awful.

    Bye
    Remmy

    Last edited by mod-anon; 10-08-2007 at 04:56 AM. Reason: Do not post commercial websites. Please read and follow the posting rules.

     
    Old 08-26-2007, 07:11 AM   #12
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    Re: PET: management and surgery

    Thanks Remmy. I looked up LPR and I do have a history years ago of an atypical kind of gerd. The body sure is complicated and integrated isn't it?

    I'll make sure the dr(s) know all the history even what seems totally not about the ear. Meantime I have experienced what I think were the breathing and heartbeat symptoms only once and briefly and it was very scary to me. That and the fact that I have only one hearing ear makes me want to pursue definitive diagnosis FIRST and invasive treatements later. I don't want things to get worse.

    Right now, it sure 'feels like' I have fluid in the middle ear - swishing when I go down steps fast, shake head etc. This is new the last couple days. I still wonder if there could be the opposite of PET going on. The first time I went to an urgent care he said the ear was bulging and gave me steriods. When I went to the oto a few days later, no bulge (but I was on steriods) and he figured Meniere's (given hearing test curve). I am wondering ...

    I'll let you all know what I find out and I will find out! Thanks for the input.

     
    Old 08-29-2007, 04:45 AM   #13
    Remmy
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    Re: PET: management and surgery

    Hi all.

    Any news about Nik?

    Bye
    Remmy

     
    Old 08-29-2007, 05:54 AM   #14
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    Re: PET: management and surgery

    Quote:
    Originally Posted by myrtle59 View Post
    Thanks very much for the information. What you have told me convices me that the distortion etc are more likely caused by a middle ear problem than Meniere's. I think my slight hearing loss is either inability to do the hearing test properly because of that or co-incidentally just showing up now but caused by an illness last year but confusing the issue for the dr.

    As of today I have the sound of fluid shifting in the left ear (hearing ear) when I shake a thermometer in the right hand. Glasses clinking sound very loud to me and I have a sensation of heat and discomfort in that ear. I don't know if this is new due to trying the estradriol spray (once only) a few days ago - some things started happening then - or just more of what's going on or what.

    I think I need re-evaluated for the big picture. If Dr. Poe were closer I would be calling him Mon. As is, I will try to at least get a diagnosis locally but if it is not sorted out to my satisfaction I will contact him before all is said and done.

    Have you consulted Dr Poe for your situation? If so, what was he able to do to help? Do you consider yourself 'cured' of the symptoms of PET?
    hi,
    i have/ had the same symptoms you describe and mine was caused by middle ear myoclonus. please read through my posts as i was convinced i had p e t and did not. the blown speaker effect was from the middle ear muscles reacting to my own voice and outside sounds. dr poe told me outside sounds do not affect p e t, only your internal sounds. i highly suggest you see him as he is the one that figured out mine was muscular. again, read through my posts and symptoms.
    good luck

     
    Old 08-29-2007, 05:02 PM   #15
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    Re: PET: management and surgery

    Lib, thanks for the reply. I started to follow your posts to get your story but had a hard time finding one that is mostly about your situation. Are you problems gone now since you saw Dr. Poe? How was he able to diagnose this? I am curious if there is some scope they can use to look at the middle ear and actually 'see' what is going on rather than guess from symptoms. I defintely want a definitive diagnosis before an invasive treatment. If there is such a thing, I am thinking the neuro-oto in Pitts should be able to do the same thing.

    Also, I did try to read about middle ear myoclonus and it talks alot about clicking or popping sounds. This is one thing I do not have. Is the clicking always present with this?

    What treatment did you have and what was the outcome re your symptoms. Was there any down side to the treatment?

    thanks

    Last edited by myrtle59; 08-29-2007 at 05:04 PM. Reason: add something

     
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