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Old 01-31-2013, 03:39 PM   #1
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Eustachian Tube Obliteration, Autophony issues. Need Advice

Hello guys this is my first post here and I pray to God I can get some experiences here from others who suffer similar things like I do. Here is a little history about my self. Two years ago around late April of 2011 I started to have issues with fluid build up in left ear and it would linger on for a long time and never go away.

I saw a local ent dr and he said it was most likely allergies but I explained to him I never had problems like this before. Fast forward to the fall of 2011 I had surgery done to fix my deviated septum which helped me to breath equal on both sides. All during this time I kept having to get tubes put in left ear and the fluid build up kept getting worse and worse. My health and job performance started to decrease very rapidly and I felt worn out all the time.

I kept going to local ent for wanting to know what was wrong and he kept saying allergies etc. Fast forward to Spring of 2012 I started to have issues with terrible sinus headaches and my jaw started to get stiff on left side and I could no longer open my mouth all the way. I started to get massive nose bleeds that would last 12 hours and it kept reacuring over and over again along with the ear fluid even though I had a ear tube. Finally after almost a year my local ent dr finally did a scope and found a tumor in my nasopharynx and finally in April of 2012 he sent me to a specialist ent dr and he did tests on me and I was told I had nasopharyngeal cancer stage 4.

The tumor was the cause of the ear fluid build up on left side cause it was pushing close my eustachian tube and allowing blood and other fluid into my ear and also was what kept my jaw from opening all the way. I took radiation treatments with a total of 35 which was five days a week for seven weeks and 6 rounds of chemo and then after radiation was done I had three more rounds of chemo done.

Ok here is my problem when I started to get towards the end of my radiation treatment I started to get autophony off and on and over time it got worse and worse to where it would last all day long. I finally had enough of it and told my specialist ent dr about the problem and he scoped me and saw my eustachian tube was open and did not function like it should when you swallow etc. My right side praise God works fine and functions normal but left side does not work right anymore. I started to get autophony where it would last for all day long unless I laid down but eventually it just got to the point where it would not go away anymore.

He did a surgery where he injected a filler into the sides of my eustachian tube to fatten it up and I was fine for about two weeks but I had fluid in my ear that started up again so that took away the autophony for time being. About two weeks after that surgery and the fluid went away the autophony came back. So I had a second surgery in December and I had fluid in my ear at the time of surgery and this time he put in a silicone type injection on the outer part of my left eustachian tube and fattend it up even more.

I was fine for about three weeks and then the fluid dried up and then the autophony came back but not as bad but was still persistent. Then like clock work my chronic ear fluid came back so for now it gets rid of the autophony for muffled hearing and fluid drainage from left ear tube.

I saw Ent dr again and said only thing he can do now is a eustachian tube obliteration by taking some fat from my belly button area and plugging the eustachian tube then cauterize it shut and after it heals it should scar up and totally seal of the left eustachian tube which will get rid of autophony issues for good. But what worries me is what will be the long term side effects for doing this and even without it being done I will always have to have a tube in left ear cause of having chronic fluid reappering all the time since the tumor was found and did its damage.

I don't have very good hearing on my left side anymore cause of all this and it also rings all the time as well.

Has anyone on here had this procedure done and how has your ear pressure along with hearing and is your fluid build up really bad and do you get bad muffled sound more since having this done or not?

I had my last PET scan done and cancer is not active for now in case anyone wants to know. I really hope someone out there who has had this done can help me out and give me your experience. Thanks guys for all your posts that has helped me out with knowing what I got and what to tell my ent dr. Take care.
Eric

 
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Old 09-09-2013, 11:44 AM   #2
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Marie 67 HB User
Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

[QUOTE=ericb76;5126075]Hello guys this is my first post here and I pray to God I can get some experiences here from others who suffer similar things like I do. Here is a little history about my self. Two years ago around late April of 2011 I started to have issues with fluid build up in left ear and it would linger on for a long time and never go away.

I saw a local ent dr and he said it was most likely allergies but I explained to him I never had problems like this before. Fast forward to the fall of 2011 I had surgery done to fix my deviated septum which helped me to breath equal on both sides. All during this time I kept having to get tubes put in left ear and the fluid build up kept getting worse and worse. My health and job performance started to decrease very rapidly and I felt worn out all the time.

I kept going to local ent for wanting to know what was wrong and he kept saying allergies etc. Fast forward to Spring of 2012 I started to have issues with terrible sinus headaches and my jaw started to get stiff on left side and I could no longer open my mouth all the way. I started to get massive nose bleeds that would last 12 hours and it kept reacuring over and over again along with the ear fluid even though I had a ear tube. Finally after almost a year my local ent dr finally did a scope and found a tumor in my nasopharynx and finally in April of 2012 he sent me to a specialist ent dr and he did tests on me and I was told I had nasopharyngeal cancer stage 4.

The tumor was the cause of the ear fluid build up on left side cause it was pushing close my eustachian tube and allowing blood and other fluid into my ear and also was what kept my jaw from opening all the way. I took radiation treatments with a total of 35 which was five days a week for seven weeks and 6 rounds of chemo and then after radiation was done I had three more rounds of chemo done.

Ok here is my problem when I started to get towards the end of my radiation treatment I started to get autophony off and on and over time it got worse and worse to where it would last all day long. I finally had enough of it and told my specialist ent dr about the problem and he scoped me and saw my eustachian tube was open and did not function like it should when you swallow etc. My right side praise God works fine and functions normal but left side does not work right anymore. I started to get autophony where it would last for all day long unless I laid down but eventually it just got to the point where it would not go away anymore.

He did a surgery where he injected a filler into the sides of my eustachian tube to fatten it up and I was fine for about two weeks but I had fluid in my ear that started up again so that took away the autophony for time being. About two weeks after that surgery and the fluid went away the autophony came back. So I had a second surgery in December and I had fluid in my ear at the time of surgery and this time he put in a silicone type injection on the outer part of my left eustachian tube and fattend it up even more.

I was fine for about three weeks and then the fluid dried up and then the autophony came back but not as bad but was still persistent. Then like clock work my chronic ear fluid came back so for now it gets rid of the autophony for muffled hearing and fluid drainage from left ear tube.

I saw Ent dr again and said only thing he can do now is a eustachian tube obliteration by taking some fat from my belly button area and plugging the eustachian tube then cauterize it shut and after it heals it should scar up and totally seal of the left eustachian tube which will get rid of autophony issues for good. But what worries me is what will be the long term side effects for doing this and even without it being done I will always have to have a tube in left ear cause of having chronic fluid reappering all the time since the tumor was found and did its damage.

I don't have very good hearing on my left side anymore cause of all this and it also rings all the time as well.

Has anyone on here had this procedure done and how has your ear pressure along with hearing
Dear Eric,
Did they ever tell you what caused this tumor? Is cancer in your family? Did you use nose drops for years? I'll pray for you if that is ok.
Marie

 
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Old 09-09-2013, 03:27 PM   #3
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

Hello marie yes cancer does run in my family but this type of cancer is a very rare form of cancer that is mostly over in Asia areas and is less then one percent in the US so I was unfortunately one to get it. I am one of the first cases ever in the state of ohio so its a very rare thing. I hardly ever used nasel spray or ever had any problems nasel wise except for a deviated septum and just regular allergies.

 
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Old 09-10-2013, 01:03 AM   #4
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Marie 67 HB User
Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

Where in Ohio are you located? I'm in Ohio as well. Columbus. How old are you? My cousins father is in his mid sixties and dying of Lou Gehrigs disease. No family history or anything. What is interesting is that they are in Parkersburg, W.Va. and she told me that there are abnormally large amounts of this same disease in their local area. I'm not sure what the numbers are but there is a cluster in the area. Ever see the movie A Civil Action? True story. Blaine is my uncle by marriage, so were not blood related. He use to work in the DuPont warehouse. Just less than a year ago he started feeling bad, went to the doctor and got the diagnosis. Now less than a year later he is paralyzed, can't eat, go to the bathroom, totally helpless. I hope to God that I never have to live thru anything like that before I die.

That is why I believe so much in what Kevorkian was trying to do for people. It seems our government wants to make people suffer. I lost a friend who was 45 yrs old to lyposarcoma this past July. She was diagnosed a couple of years ago. She was put thru hell. She got an apartment right next to this huge 10tv tower. Her place was no more than 1000 ft or so from this thing. She lived there about a year before she was diagnosed. Coincidence or not? Lyposarcoma is a rare cancer and they say they don't know what causes it. This apartment and tv tower were directly next to Greenlawn Cemetery. Columbus' largest I believe.

What kinds of medicines have you been on thruout your life. Any for long periods of time? What has been your job or trade? Have you been exposed to chemicals thru work by any chance or live near anything that you could even remotely connect this?

 
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Old 09-10-2013, 07:50 AM   #5
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

I live in a small town called Coshocton and before I had this cancer I had no health issues what so ever and took no medicine of any kind. I am only 37 years old and the cancer I had is a very rare type its called nasopharyngeal carcinoma. I went through 35 rounds of radiation and 9 chemo treatments. The stronger one called cisplatin I refused to take cause I read it caused hearing loss and was the worse of the worse so I took carboplatin instead which is still not any good but it was not as bad side effect wise and less chance of hearing damage from it. As far as work goes I worked at walmart so no type of chemicals to deal with there and I never worked any type of job where I was exposed to anything. This cancer comes from sometimes the Epstein bar virus and I had it but a lot of people have it but don't know they do. I don't really know of anyting around my area to cause this cancer as like I had said me and one other guy had this cancer at the same time he was from Columbus and he was around my age and we are some of the first cases in over ten plus years.

 
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Old 09-10-2013, 09:31 AM   #6
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Marie 67 HB User
Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

Some of these ent's are grossly incompetent. Where in the Columbus area was this other guy from? I'm in Pickerington which is just southeast of Columbus. Near Lancaster. Did you have any infections during this time that might have resulted from the tumor? Any sore throats? What is your long term prognosis and what kind of cancer is in your family, and how closely related is it to you? How bad is the autophony? Do you ever hear something that sounds like air when your talking? Can a patulous eustachian tube fix itself if it is caused by otitis media with effusion? I did read about it and it did say otitis media with effusion is a cause of this condition. It doesn't mention if it can correct itself and return to normal. That is a question that I have. It sounds like the prognosis for this is really bad. It seems even surgery isn't very successful even most of the time. Would you considering having surgery for this condition? Could that possibly help you? I will say a prayer for you Eric that you have the strength to endure this and that you have a miraculous healing. The past two months of my life have been ruined and I'm afraid that my hearing is not going to return the way it was before. I never realized an infection could cause such permanent damage. Others have it alot worse that I do but as I said I'm not that strong and if it was any worse for me, I wouldn't want to be alive. I pray that my hearing returns to normal and if it does, I plan on thanking God everyday for it. Marie

 
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Old 09-10-2013, 04:19 PM   #7
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

The one guy I mentioned came from hilliard. As far as I go I never had any problems before the tumor formed in my nasal area. I first started with fluid build up in the left ear. I got a ear tube and that fixed it for a while then the fluid cam back and would not go away and it was because the tumor got so big about the size of a small fist that it closed off the Eustachian tube not allowing air to come and go. Everytime you swallow or sneeze the tube opens and closes real fast. After I got my treatments the tumor shrunk and the Eustachian tube never worked right ever again after that and it is now a patulous Eustachian tube and it causes the air and all sounds to travel up into my middle ear and is so damn loud its horrible. I hear my breathing and its like having darth vader breathing in your ear 24 hours and a microphone being in your ear as I talk I can't hear anything around me cause its that bad. I am supposed to get a surgery to just close off the Eustachian tube for good to get rid of the autophony issue and then they will put a tube in the ear which I already have but I just worry what will the side effects be after getting this done. I have been battling the stupid insurance company to approve this. They spent 500,000 plus dollars for cancer treatments but argue about a 10,000 surgery so go figure. There is no way a Eustachian tube can go back to normal after going bad from what I read. I still have the tumor but its the size of a golf ball and its branched out through my jaw and skull base so if the cancer ever comes back I am done for.

 
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Old 09-10-2013, 06:41 PM   #8
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

Do you mean that a eustachian tube can't recover from being patulous, or did you mean that yours can't recover from what has happened to you? When are you going to have surgery? Who is your doctor? Is he/she suppose to be good? How do you find a good ENT anyway? I went to Ohio ENT, and saw Sherri Roo. She made light of my concerns. That is not cool. I would not recommend her. I was going to make an appointment with a James Mechenbier and then I found something on the web where he was not recommended so I didn't. I did read where Roberto Castellon was recommended. Both of these doctors are in Columbus. I wonder if those websites are truthful? I want to find a decent doctor, one who isn't just going to dismiss my concerns. Do you have any suggestions? I'm surprised that you haven't been to the ENT clinic at OSU. They are suppose to be one of the best. The problem is that it takes months to get an appointment. I have no insurance so I'm screwed. Are you applying for social security disability or do you already receive it? Does Wal-Mart have disability insurance or anything like that for it's employees as well? If I'm diagnosed with a patulous eustachian I plan to talk to an attorney and try to get s.s. disability. Do you know of anyone receiving disability for a patulous eustachian? I think the condition is depressing and debilitating by itself alone. How much pain are/were you in? I imagine that it would be severely painful. Have the doctors given you plenty of narcotic pain meds or have they tried to under medicate you like they do alot of people. My friend was dying of lyposarcoma and the doctor was having her cut back on her methadone dose of 140 mg every day to 75 mg a day. What was the reasoning for that? What is the 411 on the patul-end nose drops? Have you ever tried them? Is it true that they only work alittle for the less severe cases?

 
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Old 09-10-2013, 06:49 PM   #9
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Marie 67 HB User
Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

I forgot to ask, why wasn't the tumor removed?

 
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Old 09-10-2013, 09:26 PM   #10
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

I have another question for you. I'm trying to diagnose myself so that when I go to the ent on Friday I'm not scared to death or surprised at a negative diagnosis. Is it possible to have a patulous tube and to also have fluid behind eardrum? Because it sounds to me like I have both.

 
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Old 09-11-2013, 07:06 AM   #11
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

Hello as far as I know from what research I read once you Eustachian tube goes bad it never recovers. Mine does not work anymore for function wise. It always stays open and will not go close. I had two surgeries to try to make the outer Eustachian tube bigger and to try to close up with out permanently closing it off and it was unsuccessful. I am going to the ohio state ent clinic and my dr is Dr Chio and he has been very good for me and was the one who found out my cancer. As far as walmart goes yes they have disability insurance but its not like SSI or anything like that. I know that a patulous Eustachian tube either will stay closed and that causes fluid build up or its the opposite like mine its open all the time and causes the very loud traveling of sound when you breath and eat swallow or talk etc. Makes it sound like you have a microphone in your ear and like your eardrum is going to blow up. I don't know if you can get SSI for that type of an issue or not that is something you would have to talk to the SSI folks if you apply for it and most likely you would need a lawyer to help fight your cause as well. And the tumor can not be removed as it involves opening up over half of your face in order to get too it.

 
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Old 09-11-2013, 11:16 AM   #12
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Re: Eustachian Tube Obliteration,Autophony issues. Need Advice

How long did it take for you to get into the OSU ENT clinic? Did you get a referral and get in quicker? I'm wanting to know if I have a patulous eustachian or if it's closed. I know that the fluid has indeed drained some in the last 2 months but my hearing isn't right. It's not as sharp as it was in that ear. If that makes any sense. Last friday I was told that there were bubbles behind my eardrum. He said that it looked sterile. Do you know from your past experiences if this could be fluid or air bubbles? If I have a patulous eustachian would myringotomy and suctioning make it worse? I'm assuming you had this done at least once. My ear also feels full part of the time. I know my ear concerns are minor compared to yours but I have nobody to talk to about this and I'm so scared. Has the ear problems caused you any psychological issues? This is happening with me. I've never had any problems like that in my life but I can't seem to stop thinking about this because it's always there and I am always feeling it. It makes talking difficult and I hate that. I have been withdrawing because of this. Have you had any of these same issues since you became sick? What can be done about them if my condition is permanent? I know whatever is wrong with me was caused by that ear infection. I probably shouldn't be trying to diagnose myself but I have no insurance and my husband is out of a job and I'm not working as well. I don't have money for all these expensive tests and if the doctors can't fix whatever is causing my problem what good are the tests?

 
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Old 09-11-2013, 02:26 PM   #13
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Re: Eustachian Tube Obliteration, Autophony issues. Need Advice

I got into the osu ent clinic from my local ent doctor so I did not have to wait. I can't tell you how long it would be in order to get into the osu ent clinic. As far as your ear situation I can relate to it more then you can imagine. With ear fluid in the ear that will allow air bubbles and make your hearing to be muffled and give you that fullness feeling your talking about. Does it mess with my mind the issues I have? Hell yes it does I have had to battle severe depression and continue to this day because of all I have been through from all the cancer treatments and the lasting side effects it gave me. But on to the questions you are asking. The tests in themselves are not useless but they will need to scope your sinus on both sides and have you swallow and they will be able to tell if your Eustachian tube are working right or not. The only thing a ear tube will do is allow the pressure another area to vent and allow fluid to drain if your ear is full and them using a suction device will take all the fluid out. With out the Eustachian tube venting each time you swallow or when ear pressure builds up and it stays shut then the middle because its a wet are will build up with fluid. I have read and what we both have is very rare and there is really no fix for this and trust me I know how you feel but I just try to take a day at a time. I am luck my right side works normal like it always have. I miss my old days when everything worked right but because of the stupid tumor it took all that away.

 
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Old 09-12-2013, 03:47 AM   #14
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Re: Eustachian Tube Obliteration, Autophony issues. Need Advice

Is this painful or very uncomfortable when they are scoping your sinuses? What can you tell me about patul end nose drops? Have you tried them? If so, did it help any at all?

 
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Old 09-12-2013, 07:14 AM   #15
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Re: Eustachian Tube Obliteration, Autophony issues. Need Advice

I have never used the patul nose drops but I have heard mixed results with them as for some people it worked some what and for others it did not. I have also read some people had some severe side effects from them. As far as scoping your sinus no it really does not hurt at all its just a little uncomfortable cause they go through the nose to the back of the throat.They spray a numbing spray then insert the tiny camera cable to check out things.

 
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