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Old 05-11-2006, 04:29 AM   #16
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hello every body............ I was reading here and it is very comforting to see others with same problems. I was diagnosed with meniers disease in 1977 and also eustachian tube dysfunction. I have experienced and still do most of these same reported symtoms here. I still experience pressure and the very loud debilatating noises although I did have an endolphmatic subbarrachnoid shunt tube implant in 1980 at Lennox Hill Hospital by Dr. Kenneth Haskell Brookler, a neuro otilic surgeon in NYC , Manhattan. The operation did bring my hearing up to about 65% from 20% in my right ear < I am stone deaf from birth in my left ear d/t congenital birth defect; the auditory nerve did not develope> When I was 27 I somehow procured the meniers disease. It happened 4 months after the birth of my daughter. I do not know if giving birth is what did it or if somehow the pregnancy did it; many doctors say the extra fluid in your body during pregnancy can trigger or exaberate the condition worse.
My doctors tell me that the pressure I feel is from eustachian tube dysfunction. I get very depressed about it as stated by others here but it is no use to let your self feel this way long.

I guess after the 20 some years of experiencing this , my best advice to all here is to remember that what you pay attention to grows. So try not to pay too much attention to the condition. Keep really busy in life and force yourself to get out and do things. I know that sounds so trite and simple and too neat for this condition; believe me I do understand what you all say about it but life must go on for us as well as others.............. if it helps; I have had a yoga person from India tell me there is a kind of yoga that listens to sounds . He said he thought I was an ancient and old soul that had practiced this kind of yoga and got lost...............hahahaha! Well , if that is true I guess I am hovering out there in the universe eternally listening to ALL the sounds in the universe and living out my bliss............ :-))) I AM trying to find my way back to normallacy......... meanwhile OMMMMMMMMMMMMMM ommmmmmmmmmmmmmmmmmm OMMMMMMMMMMMMMMMM
Blessings to all here!

Last edited by Kristine13826; 05-11-2006 at 04:31 AM.

 
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Old 07-31-2006, 01:55 PM   #17
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Lea Gabel HB User
Re: Patulous Eustachian Tube Surgery Experiences ?

Anyone with PET,

Firstly, Lib, I feel like I know you from reading all the threads you've posted over the last years. I've only been reading the board notes for about a month or so. My heart bleeds for you and everyone else that suffers like this. I've had PET since October 05' although I wasn't diagnosed until March or so with it specifically. Like the rest of you, it took a few doctors and the process of elimination to get that diagnosis. The only thing we are doing right now for me is the Premarin Spray and on my own I am trying the Patul-End Drops as well. I showed him all the info for it and he said it couldn't hurt to try it. What bothers me about it is that they don't list the ingredients. I know one thing like some of you have mentioned, it surely does burn. It feels like battery acid, but I don't care if it will help. Neither one have helped me yet. What disturbs me is that I hope he is correct in my diagnosis. I did have autophony and sensitivity to sounds in the first few months, but it has lifted for the most part and I am so thankful for that. The only time I heard my own breathing is when I did try a partial meringotomy (pardon the spelling if incorrect). I'm so glad he only tried a partial because he said he could tell from my reaction that it would not help my condition and suspected that might be the case which is why he didn't do the full tube surgery. The most annoying sensations I presently have are the crackling noise every time I swallow and the fullness of air that I always feel in my ears. Both of my ears are exactly the same. One is not worse than the other. There have been times over the last few months I thought I was going to go nuts. I think this was brought on for me by a relapse I had with a chronic illness right before Hurricane Wilma hit. I've had Epstein-Barr/CFS since 1996 and I have now read that PET and other similar disorders can stem from chronic illnesses. Thank you for all the information everyone has shared. I would not have learned about the drops or Dr. Poe or a lot of other information without "meeting" you all. I truly thank you.

 
Old 07-31-2006, 04:00 PM   #18
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Re: Patulous Eustachian Tube Surgery Experiences ?

Quote:
Originally Posted by Lea Gabel
Anyone with PET,

Firstly, Lib, I feel like I know you from reading all the threads you've posted over the last years. I've only been reading the board notes for about a month or so. My heart bleeds for you and everyone else that suffers like this. I've had PET since October 05' although I wasn't diagnosed until March or so with it specifically. Like the rest of you, it took a few doctors and the process of elimination to get that diagnosis. The only thing we are doing right now for me is the Premarin Spray and on my own I am trying the Patul-End Drops as well. I showed him all the info for it and he said it couldn't hurt to try it. What bothers me about it is that they don't list the ingredients. I know one thing like some of you have mentioned, it surely does burn. It feels like battery acid, but I don't care if it will help. Neither one have helped me yet. What disturbs me is that I hope he is correct in my diagnosis. I did have autophony and sensitivity to sounds in the first few months, but it has lifted for the most part and I am so thankful for that. The only time I heard my own breathing is when I did try a partial meringotomy (pardon the spelling if incorrect). I'm so glad he only tried a partial because he said he could tell from my reaction that it would not help my condition and suspected that might be the case which is why he didn't do the full tube surgery. The most annoying sensations I presently have are the crackling noise every time I swallow and the fullness of air that I always feel in my ears. Both of my ears are exactly the same. One is not worse than the other. There have been times over the last few months I thought I was going to go nuts. I think this was brought on for me by a relapse I had with a chronic illness right before Hurricane Wilma hit. I've had Epstein-Barr/CFS since 1996 and I have now read that PET and other similar disorders can stem from chronic illnesses. Thank you for all the information everyone has shared. I would not have learned about the drops or Dr. Poe or a lot of other information without "meeting" you all. I truly thank you.
hi lea,
read all of my posts, i ended up having myoclonus and the surgery to clip the tendons. make sure you have the right diagnoses...
i was in the keys on vacation for hurricane wilma btw....what a storm!
lib

 
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Old 08-01-2006, 10:04 AM   #19
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Re: Patulous Eustachian Tube Surgery Experiences ?

Lib,

You are so on the ball with getting back to people. Yes, I have read all of your posts and even noted them regarding your Myoclonus. That is what he thought I had at first and then ruled it out and I'm sorry I can't remember exactly how. He did bring a second doctor in from the University of Miami to concur. I personally believe I have some of both PET and Myoclonus (just based on symptoms alone) but I did take note of all your threads regarding the Myoclonus so that I can, once again, ask him specific questions when I see him again this month - especially since I can't remember. Does anyone else feel they are in a fog about half the time? I think he might still think it is possible that I am dealing with some of both and is focusing on what he thinks he can help me with the most which at this point is "fattening" the tube ends with the spray so that they might close. I think he realizes that it's a long shot for me, but I appreciate him continuing to try to help me. It's been about twelve weeks on the Premarin Spray and I as I stated before, I haven't had any change. I have quite a few more questions for him, based on this board. All thanks to you, Lib, and others. He always takes the time to address them all as I have lived on the Internet to find out about this even before he had diagnosed me. Doctors before him (ENT) did not even know what PET was and firmly denied that I had anything more than liquid in my ears prescribing Zyrtec, etc. which I believe may have made my symptoms worse. He is the only one that hasn't given up on me and is still trying to help me. I believe he is the best in our area. He has even brought up the name Poe to me. He seemed surprised I knew Poe's name which I had learned from this board. He said he did not have enough definitive information to suggest the surgery as a possibility. I believe he worded it like "the jury is still out on whether or not this surgery can help PET." I know you know someone who has definitely been helped by it. I guess it all depends on the individual's circumstances - and guts. I sure am happy for that person. It seems like someone would have come up with some "ear tube spackle" by now, but I guess that is kind of the premise for the surgery. Thanks for responding and I'm praying for everyone with this awful thing.

 
Old 08-01-2006, 05:22 PM   #20
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Re: Patulous Eustachian Tube Surgery Experiences ?

lea,
the brain fog is a symptom of tensor tympani syndrom...research all the conditions i listed above, i think you will be amazed.
patulous is hearing your breathing and talking loud like a megaphone in your ear....megaphone loud....also the sensitivity to outside sound is not a p e t symptom...this all straight from poe....hes an excellent careing dr....if you could see him i highly recommend that....i know its far, but he could diagnose you the best.
do your symptoms get better when you lay down or put your head between your knees?
lib
ps....what was the chronic illness that came on before this hit....that could be a huge clue...
are you in florida? i am on my way there thursday.....there is a good ear place in sarasota i hear!

Last edited by lib; 08-01-2006 at 05:25 PM.

 
Old 08-01-2006, 06:39 PM   #21
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Lea Gabel HB User
Re: Patulous Eustachian Tube Surgery Experiences ?

Hi Lib:

The EB/CFS that I mentioned in my first posting is the autoimmune illness that I've been battling since 1996. I had a serious relapse with it and the PET symptoms started. That also took a long time to diagnose - almost a year. Like PET, most medical doctors don't know much about it. My situation does not improve when I put my head between my knees. Believe me, I tried it after some of you mentioned this helped you - nor does anything change when I lay down. At present, I am not so sensitive to sound nor am I experiencing autophony. This was more of a problem for me during the first few months and especially when my ENT tried the partial tube surgery. The tapping sound is not as pronounced either which was always at its worst when I was on the phone. The phone is still unpleasant. These symptoms were worse the first few months. My symptoms right now are the uncomfortable full feeling of air in both ears and the awful crackle I hear whenever I swallow. My other symptom is a motor or cat purr that I hear when my ear is cupped or placed against a pillow. It makes trying to sleep even more difficult because I am a side sleeper. I think it's always there, but that is when it is the most annoying. A Dr. Poe appointment is definitely something I'm seriously thinking about once I meet with my ENT again. I want his feedback on a few of these things I've learned from you and others on the board. I do live in Florida. Sarasota is across the state from me as I am on the east coast. I hope you have good luck with the ear place there. Thank you for your questions of interest, your help and knowledge and I wish you a safe trip. Let me know if you make it over to the east coast!

 
Old 08-01-2006, 06:46 PM   #22
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Re: Patulous Eustachian Tube Surgery Experiences ?

Quote:
Originally Posted by Lea Gabel
Hi Lib:

The EB/CFS that I mentioned in my first posting is the autoimmune illness that I've been battling since 1996. I had a serious relapse with it and the PET symptoms started. That also took a long time to diagnose - almost a year. Like PET, most medical doctors don't know much about it. My situation does not improve when I put my head between my knees. Believe me, I tried it after some of you mentioned this helped you - nor does anything change when I lay down. At present, I am not so sensitive to sound nor am I experiencing autophony. This was more of a problem for me during the first few months and especially when my ENT tried the partial tube surgery. The tapping sound is not as pronounced either which was always at its worst when I was on the phone. The phone is still unpleasant. These symptoms were worse the first few months. My symptoms right now are the uncomfortable full feeling of air in both ears and the awful crackle I hear whenever I swallow. My other symptom is a motor or cat purr that I hear when my ear is cupped or placed against a pillow. It makes trying to sleep even more difficult because I am a side sleeper. I think it's always there, but that is when it is the most annoying. A Dr. Poe appointment is definitely something I'm seriously thinking about once I meet with my ENT again. I want his feedback on a few of these things I've learned from you and others on the board. I do live in Florida. Sarasota is across the state from me as I am on the east coast. I hope you have good luck with the ear place there. Thank you for your questions of interest, your help and knowledge and I wish you a safe trip. Let me know if you make it over to the east coast!
hi lea,
the symptoms of tapping and motor car are definatley myoclonus symptoms as are the fullnes, i had these and severing the tendons helped get rid of it, no more tapping.
i am going to orlando and sarasota, tampa for vacation...no drs. in fact i think dr sismanis in richmond would be a good one for you to see, hes my doc, he did my surgery to sever the tendons and as well others. he could sort out the myoclonus symptoms.
where on the east coast are you?
cant wait i love fla and am considering moveing.
btw...they think a virus triggered my myoclonus, sounds like this should be investigated in you as well.....a clue!
lib

 
Old 08-02-2006, 02:22 PM   #23
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Lea Gabel HB User
Re: Patulous Eustachian Tube Surgery Experiences ?

Lib - I live outside of West Palm Beach. So glad you are able to take a trip and enjoy yourself. Between my other health issues and this PET I really haven't been outside my house much other than to doctor appointments since October. It's been a long ten months, and really ten years with everything. Thank you for helping me think that life might be possible. I so much want to see my folks, but I'm afraid that flying will make me go backwards. Thank you for the Myoclonus information as well and I've made a note of your doctor's name. I hope you have a great vacation and this Hurricane Chris stays out of the way. It looks like he'll be too far south to disturb your plans - he better be! Blessings.

Kristine - Thank you for your advice. I've read it a few times. I hope to be able to acquire your mind set which makes me wonder if anyone has ever considered hypnosis to possibly train the mind to dismiss or ignore the PET symptoms - just a thought. I guess if it helped, many would be doing it for almost all heath issues where people are uncomfortable or in pain. Blessings back to you.

 
Old 08-02-2006, 06:05 PM   #24
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Re: Patulous Eustachian Tube Surgery Experiences ?

lea...
the key is the right dx to get your life back. i have flown several times since all this and i am fine....the surgery to sever the tendons was the trick.....its a simple procedure.....so try to get to poe or sismanis....
hang in there, i was the same in my house for over a year, it was a nightmare.
things are much better.
thank you for your well wishes....i love florida!
lib

 
Old 08-17-2006, 09:44 AM   #25
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Lea Gabel HB User
Re: Patulous Eustachian Tube Surgery Experiences ?

Lib:

I sent you a private message on another board. I hope you receive it. Thank you for your help and I hope you had a wonderful time in Florida.

 
Old 08-17-2006, 05:14 PM   #26
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Re: Patulous Eustachian Tube Surgery Experiences ?

Quote:
Originally Posted by Lea Gabel
Lib:

I sent you a private message on another board. I hope you receive it. Thank you for your help and I hope you had a wonderful time in Florida.
florida was great!!! i love it there! i did not get the message, what board was it?
lib

 
Old 08-18-2006, 01:19 PM   #27
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hey Lib!

It was the Hyperacusis Network. I lost it once and had to retype it so maybe it just didn't go through. I'm new to all this so I could have made a mistake in sending it or maybe it was unacceptable to a moderator? I don't know. Thanks for looking and for letting me know.

 
Old 08-19-2006, 07:44 AM   #28
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Re: Patulous Eustachian Tube Surgery Experiences ?

lea...try to send it again!

 
Old 09-08-2006, 06:22 AM   #29
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Re: Patulous Eustachian Tube Surgery Experiences ?

OH my goodness, it so SO good to hear other people with my same problems and struggles. I am 24 years old and also a PET sufferer, mostly on the right side, and have been for the past 8 years. I have tried many remedies, including having a tube placed in my ear last summer which was of no help at all. I have found that caffeine and alcohol tend to make it worse, as well as times when I am very thirsty or have just exercised. It reallly drives me crazy. The only way it goes away is when lying down. It's also strange because it usually only bothers me until about lunch time and then once I've eaten lunch (not the same effect with breakfast for some reason) it will typically go away until the next morning, unless I work out or drink caffeine. I have also noticed my nose runs a lot when it is acting up and have often theorized that it may be allergy related. I am a thin female that loves to run, and also take hormone therapy (not contraceptives but estrogen and prometrium to regulate my cycle) and all of these I believe to be risk factors, or so I've read and heard from various doctors.

Does anyone have any advice or new remedies that you've heard of? Do you take any sort of hormone replacement or birth control? Do you think that this may effect it? I am interested in ANYTHING anyone has to offer by way of advice!!

 
Old 09-08-2006, 10:50 AM   #30
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Re: Patulous Eustachian Tube Surgery Experiences ?

Quote:
Originally Posted by ngavin
OH my goodness, it so SO good to hear other people with my same problems and struggles. I am 24 years old and also a PET sufferer, mostly on the right side, and have been for the past 8 years. I have tried many remedies, including having a tube placed in my ear last summer which was of no help at all. I have found that caffeine and alcohol tend to make it worse, as well as times when I am very thirsty or have just exercised. It reallly drives me crazy. The only way it goes away is when lying down. It's also strange because it usually only bothers me until about lunch time and then once I've eaten lunch (not the same effect with breakfast for some reason) it will typically go away until the next morning, unless I work out or drink caffeine. I have also noticed my nose runs a lot when it is acting up and have often theorized that it may be allergy related. I am a thin female that loves to run, and also take hormone therapy (not contraceptives but estrogen and prometrium to regulate my cycle) and all of these I believe to be risk factors, or so I've read and heard from various doctors.

Does anyone have any advice or new remedies that you've heard of? Do you take any sort of hormone replacement or birth control? Do you think that this may effect it? I am interested in ANYTHING anyone has to offer by way of advice!!
what are your symptoms?
i ask because usually it gets worse later in the day and people with p e t get relief with a runny nose...

 
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