It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Ear, Nose & Throat Message Board

  • Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-15-2010, 10:24 AM   #46
    fluffyshouse
    Senior Member
    (female)
     
    Join Date: Feb 2007
    Location: Salt Lake City, Utah USA
    Posts: 105
    fluffyshouse HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Hello Andrew,

    Thank you for taking the time to respond. I will take your answers to the doctor at the university where I live and talk to him about the risks of the surgery.

    I have had vent. tubes for four years and they have been no problem. They are better than autophony if I were to choose to obliterate. But my autophony can be controlled right now, so it is only an annoyance at times. I have had seven surgeries on my ears to fix PET, so the shims are my last hope before obliteration. That is why I am getting educated on it.

    I would like to know someone who has had it and see how they are doing. Do you know of anyone?

    Thank you again for your detailed answers. I really appreciate it.

    Cathy

     
    Sponsors Lightbulb
       
    Old 12-16-2010, 03:22 PM   #47
    andr3w
    Junior Member
    (male)
     
    Join Date: Oct 2008
    Location: Canada
    Posts: 11
    andr3w HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Hi Cathy,

    Unfortunately I don't know of anyone who has has the obliteration done. In terms of the tubes in the ears causing problems it was more of a long term thing (eg. 10 years or so before it could start causing hearing loss). The idea is that over a lengthy amount of time scar tissue slowly builds on the ear drum from constantly having a hole in it and the result is gradual hearing loss. That's why I am also saving it for a last result.

    Andrew

     
    Old 03-14-2011, 07:15 AM   #48
    andr3w
    Junior Member
    (male)
     
    Join Date: Oct 2008
    Location: Canada
    Posts: 11
    andr3w HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Just a quick update... I contacted Dr. Poe's office last week and the FDA has requested more information again. I was told that the shims could be either approved within a few months or it could still take over a year if more information is requested.

     
    Old 03-14-2011, 11:12 AM   #49
    fluffyshouse
    Senior Member
    (female)
     
    Join Date: Feb 2007
    Location: Salt Lake City, Utah USA
    Posts: 105
    fluffyshouse HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    You are the nicest to let me know. The wait is hard.

    I am looking into obliteration just to know what my options are. I would like to communicate with people who have had their Eustachian tubes obliterated. Do you know of any?

    I know that the FDA wanted more information from the manufacturer last fall and they were working on answering the FDA's questions. Are you talking about the information wanted from then, or is this new, new information just in the last few weeks? I am hoping it is the old request still pending.

    Thank you for being so thoughtful in letting me know what you are hearing.

     
    Old 03-14-2011, 01:53 PM   #50
    andr3w
    Junior Member
    (male)
     
    Join Date: Oct 2008
    Location: Canada
    Posts: 11
    andr3w HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Not a problem. It sounds like they requested additional information in addition to the request from last fall.

    This is what was sent to me: "They have requested further info from the manufacturer, who is trying to respond".

    Basically his office said that if the information is satisfactory the approval should come shortly, otherwise we're still looking at a longer time frame.

    Unfortunately I don't know of anyone who has had the obliterated...I too wouldn't mind hearing from someone their experience with that procedure.

     
    Old 04-13-2011, 01:11 PM   #51
    montrealguy
    Newbie
    (male)
     
    Join Date: Nov 2007
    Location: Montreal
    Posts: 5
    montrealguy HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Quote:
    Originally Posted by hedy View Post
    The problem is that there are so many different symptoms people have with PET. Some people only have autophony and other people...like me....have tons of pressure, clicking and popping. If I only had autophony, I feel certain that I would feel pretty normal now because the Patulend is very effective on that. Not so much for the other symptoms, which are what I was considering the grommets for. Although I have been encouraged that the other symptoms just take longer to go away and I should persist with the drops....which I am doing.
    Do you have autophony? I saw your post and got excited. I have pressure in my ears constantly and lots of clicking and popping...but no autophony. I want to find other people like me. The pressure drives me crazy- I always feel like I'm on an airplane that is descending.

    Last edited by Administrator; 10-06-2013 at 03:08 PM.

     
    Old 04-22-2011, 06:57 PM   #52
    hedy-446
    Junior Member
    (female)
     
    Join Date: Jun 2010
    Posts: 22
    hedy-446 HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    I do get autophony....just not all the time and it's not my only issue.

    I am still figuring things out. I can tell you that TMJ treatment has helped me a lot with the pressure feeling. I had a hole in my ear and it didn't help the pressure at all. It did get rid of the popping and snapping but my voice had an echo and I had ringing in the ear until it closed so it wasn't very helpful.

    Lately I've had more autophony than I was having the past few months and popping.

    I think my case might be a bit on the line....PET treatments cause my e-tube to stick so I get pressure and popping and ETD treatments give me autophony.

    If you don't have autophony ever....breathing autophony especially...I don't think you have PET. If you are getting pressure, popping and clicking I would investigate ETD, TMJ or LPR.

     
    Old 07-28-2011, 02:33 AM   #53
    miguelM
    Newbie
    (male)
     
    Join Date: Jul 2011
    Location: Los Angeles, California
    Posts: 3
    miguelM HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Hi andr3w and fluffyshouse, I have had the eustachian tube obliteration surgery in 2005 in the left ear and then right eustachian tube obliteration in 2006. The surgery was done by Dr. Slattery at the House Ear Clinic in Los Angeles. It involved using an autologous fat graft from the abdomen and inserting into the opening of the ET and cauterizing it completely closed. The symptoms of PET are immediately improved after the surgery however it has some major drawbacks that I wish I would've really known more about before having these surgeries done.

    The problem is that it is "irreversible" and permanent so you will be required to have ventilation tubes in permanently and the biggest problem for me was that after having the RT eustachian tube obliterated I developed an ear infection and have had chronic middle ear glue since then. Now I have to constantly drain my middle ear with ear drops through the ventilation tube to not have my middle ear filled with thick mucus. It has been very difficult to deal with and fix since my ET has no function whatsoever. I would not recommend this surgery as an option I would recommend something less invasive as to not disrupt the normal function of the ET.

     
    Old 07-28-2011, 09:26 AM   #54
    fluffyshouse
    Senior Member
    (female)
     
    Join Date: Feb 2007
    Location: Salt Lake City, Utah USA
    Posts: 105
    fluffyshouse HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Dear MiguelM, I cannot believe that you have written to us about this. Only yesterday I was searching for some information on permanent obliteration. I am thinking about it quite seriously. A few of us have wanted to correspond with someone who has had their E tube obliterated. You must have heard our cries for information. I am going to Boston in August to see Dr. Poe for my eighth surgery to try and do a temporary obliteration. I feel bad that you are having problems. Are your problems typical of a permanent obiteration? Having vent. tubes do not scare me but the "glue" does. But autophony is so bad that I might be willing to take the chance and do the permanent obliteration anyway. Any more info you can share about anyone else who has had permanent obliteration, please post it. Thank you soooo much for writing. I still cannot believe that you wrote when I spent a good part of yesterday searching for someone on the internet. Thank you again. Please write more about what you are going through.

     
    Old 07-28-2011, 01:12 PM   #55
    miguelM
    Newbie
    (male)
     
    Join Date: Jul 2011
    Location: Los Angeles, California
    Posts: 3
    miguelM HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    I have had 10> surgeries related to my ET dysfunction so I can empathize with what you have gone through. I had a Rt mastoidectomy lifting up the eardrum to clean out the mastoid region behind the ear to try to decrease the mucus secretions but it was unsuccessful. I even had the obliteration "reversed" by removing the fat graft but it was unsuccessful because the ET scarred shut after 3 weeks. I have even traveled to Geneva, Switzerland to have Dr. Kujawski do laser tuboplasty to try to create a functional ET but it scarred shut after 1 month and I continued to have the ear glue. I have tried expensive allergy shots to try to decrease the mucus secretions but to no avail. I do not know of anyone else who has had this extreme procedure that I have had. But I would highly recommend against permanently obliterating the ET, one ear infection and you could get permanent ear glue for the rest of your life.

     
    Old 07-29-2011, 09:20 AM   #56
    fluffyshouse
    Senior Member
    (female)
     
    Join Date: Feb 2007
    Location: Salt Lake City, Utah USA
    Posts: 105
    fluffyshouse HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    You are so kind to have written to me. It's unbelievably coincidental that you wrote to me after I had spent many hours the night before searching for someone who had had an obliteration. You came out of the blue.

    Have you heard of Dr. Poe? Of course, you have, after all you have gone through. I talked to him yesterday about you and like you, is against permanent obliteration. Maybe he can help you. He does amazing things and could possibly think of a way to open your E tube(s). He is in Boston. He will get back to you. Let me know how things go. I care. Oh, how is your other ear?

     
    Old 07-29-2011, 02:45 PM   #57
    miguelM
    Newbie
    (male)
     
    Join Date: Jul 2011
    Location: Los Angeles, California
    Posts: 3
    miguelM HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    When I saw your question about the permanent obliteration I just had to reply since I don't want anybody else to have to go through what I have. If Dr. Poe is offering you an alternative such as the angio-cath insertion or the cartilage graft procedure I would go with that instead. Also the Shea clinic offers a silicone tube 1mm in diameter that can be inserted in as well. I don't know of anybody who has had the cartilage graft or silicone tube put in place but I would love to know how that went.

    Last edited by moderator2; 07-29-2011 at 04:14 PM.

     
    Old 07-29-2011, 04:46 PM   #58
    fluffyshouse
    Senior Member
    (female)
     
    Join Date: Feb 2007
    Location: Salt Lake City, Utah USA
    Posts: 105
    fluffyshouse HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    I have had two cartilage grafts, a silicon plug, a fat graft, the Shea catheter, and two other kinds of catheters. Oh, and Radiesse injections for a total of eight surgeries. But we have a new plan later on in August so hopefully that will work for me.

    The most successful of all the surgeries has been the catheters that Dr. Poe put in. The Shea catheter did nothing. So my next surgery will involve the same kind of catheters that I currently have, but with a little bit of a change. Hopefully that will work.

    I am very sorry that you are going through a bad time. I still think you should contact Dr. Poe. He has opened up an obliterated Eustachian tube before. It was difficult, but he did it. He does not want me to obliterate my Eustachian tubes either. That is why we are trying all sorts of things to avoid that, but then autophony is life altering, too.

    We have been waiting for someone to post their obliteration experiences on this site. If there are others, especially with success stories, please write about it. Thank you.

     
    Old 08-13-2011, 03:41 PM   #59
    Nate5sport
    Newbie
    (male)
     
    Join Date: Aug 2011
    Location: West Hartford, Ct, USA
    Posts: 7
    Nate5sport HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Hi everyone.

    I am a 17 year old male who started having patulous eustachian tube symptoms in my right ear about 5 years ago. In recent months it has progressed to the point where it has completely put my life on hold. I just barely graduated high school after being accepted to Cornell and spent the majority of the past 5 months in bed. My autophony is 24/7 unless I am laying down and also includes hearing my heartbeat and my hearing at almost painfully loud levels. So far I have seen 2 doctors, Dr. Michaelides in CT where I live and of course Dr. Poe. Dr. M performed a cartilage graft on 7/12 which failed the same day. Dr Poe performed a subsequent cartilage injection on 8/5 which did not work during the operation and he switched to another cartilage graft to try to bolster the eustachian tube some more. Unfortunately that procedure failed the next day. Now I am scheduled to leave for college next Friday and in my current condition I'm not going anywhere. Dr. Poe called me the following day to ask how I was doing and when I told him what happened he immediately scheduled me to be seen. When he looked at the E-tube he said that the top was nearly obliterated and it appeared that I had sprung a leak at the bottom, something that is very unusual for most of his patients. Anyways he fit me in for surgery this upcoming Monday (8/15) only 5 days before I am supposed to leave for college. His plan is to inject the Radiesse paste at the bottom to functionally close of the E-tube. My biggest fear is that this will fail and that I will have to defer college for a year.

    Dr. Poe is a fantastic doctor, and for any sufferers of patulous eustachian tube don't bother with anyone else...go straight to him.

     
    Old 08-18-2011, 01:21 PM   #60
    fluffyshouse
    Senior Member
    (female)
     
    Join Date: Feb 2007
    Location: Salt Lake City, Utah USA
    Posts: 105
    fluffyshouse HB User
    Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

    Hello Nate5sport,

    I am so sorry to hear about your ears, especially at such a young age. I, too, had surgery by Dr. Poe this last Monday. I read your post right before I left for the hospital.

    I looked for you in the waiting room, only knowing your age, but didn't see you.

    I am wondering how you are doing three days after your surgery. I am doing fine - no autophony so far, but I can tell there is still swelling in my ears.

    I agree with you about Dr. Poe. He is the best and only doctor to care and treat PET.

    Do you know why or how your ear because patulous? I had a bad head cold six years ago. That is what started mine.

    Let me know how you are doing. I care.

    Fluffyshouse

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Roaring tinnitus - Patulous eustachian tube? paul2009 Ear, Nose & Throat 10 08-29-2011 01:32 PM
    Patulous Eustachian Tube surgery Fluffyshouse crazyears51 Hearing Disorders 26 08-29-2010 03:38 PM
    patulous eustachian tube after a flight wali2009 Ear, Nose & Throat 3 11-20-2009 07:21 AM
    Just dx'd with patulous drive-me-crazy eustachian tube OhMyEars Hearing Disorders 16 12-18-2008 01:30 AM
    PET Patulous eustachian tube - Started new therapy it's working petear Inner Ear Disorders 66 09-04-2008 12:31 PM
    Patulous Eustachian Tube has Destroyed my Life EarOfDespair Inner Ear Disorders 21 05-03-2008 11:48 AM
    Eustachian Tube Dysfunction caused by Bruxism lefta Inner Ear Disorders 128 10-21-2007 09:06 PM
    Patulous Eustachian tube-Please help btkirb2 Inner Ear Disorders 57 02-23-2006 03:05 PM
    Patulous Eustachian Tube gryzly Hearing Disorders 10 01-18-2004 09:00 PM
    Does any one out there have patulous eustachian tube? aja Inner Ear Disorders 3 02-19-2003 11:51 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 01:16 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!