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



Inner Ear Disorders Message Board

  • for the undiagnosed dont forget these things as most drs dont bother

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-15-2005, 05:34 AM   #166
    lib
    Senior Veteran
    (female)
     
    Join Date: Nov 2003
    Posts: 850
    lib HB Userlib HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by ccc123
    hi lib, you have done well to find a closer location to have your surgery. Did Dr Poe recommend you to the nih and to a particular surgeon that he knows? All the ENT people over seem to know each other and have met at some stage either in their training or at conferences, i guess.
    Is the muscle surgey for the 'palatal', ET tube or middle ear myoclonus? I am understanding you have 2 lots of spasming and thumping? - one in middle ear that muscle severing helps and alleviates tympanic membrane from moving - and that other now is the thumping in the palate? If this is right, are you thinking you will need further surgery down the track for palate?
    I wonder how far pp is from Dr Poe?
    No, i haven't made appt yet. Need time to sort things out. I like to be really organised i guess, and i don't feel that way at moment. I need time; plenty of money! and the will and motivation to keep going with this to try and find a liveable solution. Fifteen years ago I went through some surgeries for this- grommets (many), a disolveable 'gelfoam' in ET tube, having to work just parttime and eventually gave work up. Am manageing ok at moment, have done some job retraining and have small business at home. Need more time now to research on net- myoclonus, patulend drops etc. I suppose have come to accept more now that i haveto bear with this condition and have arranged my life accordingly. Am trying to get my family now to become as independent as possible, doing things for themselves. I think this will help take some of the 'burden' off of me and lighten my stress level and load. They're used to me being the 'organiser' and this was the way it had to be in times gone by- but i need them to help themselves now and this will help me. If my prob becomes and stays worse i need to know that my family can all take care of themselves.
    I get depressed with the fact that i can't function to the maximum level that i once was- i mean i knew nothing about ear probs until i was a teenager and then suddenly my life was about going to docs, ENT docs and having some painful and uncomfortable things done to my ears. I feel like i've always had to apply extra effort, concentration and energy to do things that 'people without ear problems' know nothing about. That is, difficulty hearing and talking in social situations, having more physical illness like sinus and ear infections etc, and getting very fatigued. I also don't travel by plane as i worry about the pain that could possibly be caused, so i miss out on holidays and trips that others take for granted. This makes me feel down as my family won't go on holidays unless i go, so we go everywhere by car or train (my hubby, in his effort to try and fix things for me traded our old car for a type of 4 wheel drive car, so that we could travel interstate, seeing as i am worried about plane travel... he's great like that!)
    Even though i believe the ET tube is mostly open, I have been advised in the past that it is also quite narrow, though 'floppy' and can be very dysfunctional- i.e. i can easily get a middle ear infection from sinus. The infection can easily travel up the L ET tube 'cause its open. Everything gets out of control then and swells. The tympanic membrane is so thin and damaged that it takes weeks then for my hearing to go back to what i perceive now as my 'normal', even though when this happens the 'autophony' is lessened due to the inflammation. Anyway enough from me. Take care and talk soon. cc.
    hi cc,
    the surgery was for the middle ear muscles on the right side, it has helped in that the eardrum does not get thumped and kicked out of my head.
    i dont think there is any surgery for palatal. they may try botox.
    i found the other docs on my own, dr poe told me to find a neuro that knew something about myoclonus, i went to one who reffered me to nih.
    he is aware i am going and also is the one who recommended the surgery.
    pp is on the west coat and poe the east, about 6 hours by plane.
    cc...the more i read from you i wonder, people with p e t fly with no problem, the tube is open so they can fly with out worry of pain and infection. also a narrow but floppy tube does not really sound right, however myoclonus can cause eustacian tube dysfunction, and it can show on ear tests, i wonder if your tests were abnormal because of myoclonus.
    i really hope you go see this new doc, armed with bothpet and myoclonus info, he might be able to see or test to dx the right condition.
    hopeing for a great 2005 for us all!
    lib
    oh and people with e tube dysfunction get autophoney also....

    Last edited by lib; 01-15-2005 at 05:35 AM.

     
    Sponsors Lightbulb
       
    Old 01-15-2005, 12:34 PM   #167
    nutmeg123
    Registered User
    (female)
     
    Join Date: Jan 2005
    Location: Maine
    Posts: 64
    nutmeg123 HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    wow.....I am new to this healthboard stuff..just signed on yesterday and have searched for help for my ear problems. It has been hard to follow b/c I felt on this thread I needed to start from day one and it has taken me hours to read them all!
    In short I believe I likely have PET..
    symptoms:
    1) dreadful autophony, almost exclusively when I sing, which is a big part of my life..Im a worship leader at church and sing in a womens quartet..

    2) my breathing sounds like wind rushing by a window

    3) heaviness in my left ear even when the autophony isn't present

    I have read it can be brought on by hormone therapy (my condition got worse when I went on the pill this aug for hormone adjustment)

    I have lost 40 lb over the past 9 mos (I am at a healthy weight for my height but not anorexic looking)

    so I can really relate to you all here, especially I think Petpeeve b/c we seem to have the same symptoms. If you bend over in half, trying to touch your nose to your knees does your ear feel like it opens right up? mine does..I can't sing and talk upside down all day tho! And for me, I am not usually affected day in and day out. If I don't sing, it doesn't usually flare up. I will sometimes but not usually.
    I have found all of your inputs very supportive. I live in Maine and am going to look into this Dr Poe, Boston is only about 3 hours from me by car.
    I hope you all find relief from this..
    cl

     
    Old 01-15-2005, 12:38 PM   #168
    nutmeg123
    Registered User
    (female)
     
    Join Date: Jan 2005
    Location: Maine
    Posts: 64
    nutmeg123 HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    I am also wondering how Kathleen is doing with the non-ear problems, the skin problems and possible bells palsy..does anyone know?
    cl

     
    Old 01-15-2005, 12:38 PM   #169
    lib
    Senior Veteran
    (female)
     
    Join Date: Nov 2003
    Posts: 850
    lib HB Userlib HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    dr poe is the authority on this you are very lucky to have him so close. he is a wonderful careing doc i am greatful to him forever.
    make an appt and let us know....hes the man to see!
    lib

     
    Old 01-15-2005, 12:58 PM   #170
    nutmeg123
    Registered User
    (female)
     
    Join Date: Jan 2005
    Location: Maine
    Posts: 64
    nutmeg123 HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    thaxn lib, I will..question is about insurance etc? I have an HMO and have to get authorization etc before anything. I am hoping my GP will be willing to recommend him! as it is, she is very supportive of my input and anxious to hear what I have found..I emailed her info I found on PET and asked if it could be what I have..then I found this board and am convinced now more than ever..thanx!

     
    Old 01-15-2005, 04:41 PM   #171
    ccc123
    Member
     
    ccc123's Avatar
     
    Join Date: Jul 2004
    Posts: 60
    ccc123 HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi there, lib i will definitely get researching on the myoclonus and see what i can find.
    nutmeg, i was interested to see what you've written about being put on the 'pill' and how the medicos think that PET is linked, as I've read the same thing over the years. You are fortunate to be so near to Dr Poe and it will be interesting to see what he can do for you. Take care . Talk soon cc.

     
    Old 02-19-2006, 12:10 PM   #172
    KSM79
    Member
    (male)
     
    KSM79's Avatar
     
    Join Date: Sep 2005
    Posts: 63
    KSM79 HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    HI Lib,
    I have been following your posts regularly but haven't replied to any of your posts. I am a 26 year old guy suffering from PET since the past coupla years. I read about your surgery conducted by Dr.Poe. So wanted to ask you if it was successful? How are you feeling now? Please reply if you get this and i'll keep in touch, thanks
    Kunal

     
    Old 02-19-2006, 03:35 PM   #173
    lib
    Senior Veteran
    (female)
     
    Join Date: Nov 2003
    Posts: 850
    lib HB Userlib HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by KSM79
    HI Lib,
    I have been following your posts regularly but haven't replied to any of your posts. I am a 26 year old guy suffering from PET since the past coupla years. I read about your surgery conducted by Dr.Poe. So wanted to ask you if it was successful? How are you feeling now? Please reply if you get this and i'll keep in touch, thanks
    Kunal
    actually it turns out i have myoclonus of the middle ear and e tube....
    i had the tendons severed in my ear and that helped!

     
    Old 02-07-2008, 08:13 PM   #174
    hollygigi68
    Newbie
    (female)
     
    hollygigi68's Avatar
     
    Join Date: Feb 2008
    Location: CLEARWATER,FL.PINELLAS
    Posts: 1
    hollygigi68 HB User
    Post Re: for the undiagnosed dont forget these things as most drs dont bother

    Hello, I just joined this group to see if anybody heard of Glomus Tumor of the jugular bulb. Women get it in the left ear first ,Men get it in the right ear first.I have it and am termnal with it . sounds familiar, Very rare only 1 in 1.3 million get it."SO how come Me?"ven the temperal bone is erroded can hear heart pulse in ear along with ringing, If anybody has heard of this I would Like to hear from Them.This is not cancerous however radiation treatments CAN cause it to turn to cancer and also make more grow, ONLY the doctors donot tell you this when they sugest radiation treatments.

     
    Closed Thread




    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 06:21 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!