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Hearing Disorders Message Board


Hearing Disorders Board Index


[QUOTE=SanDee53;3540294]So John, what are you going to do? I have been to so many Drs and had so many opinions that I have no idea what is wrong. Told allergies, TMJ and now Cochlear Hydrops. That I have fluid in the middle ear. I have been put on a water pill as they say it is cuased from too much sodium in the body and the water pill will help flush it out. I am told if it works this is what I have. If it does not then back to square one. I have been battling this problem now for 10 months and no positive diagnosis.

My main complaint is the feeling of fullness in my left ear which seems to be the most common ear for these problems. I also have the hearing my voice in my head and a vibration that gets louder the louder I talk. To just listen life is mostly normal but to talk is agony. I cannot be in a crowded room such as a restaurant with a lot of chartter and background noice. Drives my ear crazy. I am constantly putting my hand over my ear when I talk. Not sure why but seems to help. I have had a CAT Scan and MRI and all normal. My hearing is a little diminished according to the audiologist. I had a dream one night that my ear popped and everything was normal again. I was jumping up and down and dancing around the room I was so excited. Then, I woke up![/QUOTE]


Hi San Dee,

Before I attempt any kind of treatment, be it medicinal or surgical, I need at least 3 doctors/surgeons to agree with each other to confirm the root cause of my ear problems, the super specialist I saw is convinced TMJ Disorder is playing a part in my ear problems (he even says that my ET dysfunction is causing my autophony and that TMJ disorder is responsible from my ET disorder, this can happen as proven by the lady successfully treated by Botox injections)), however 2 other docs I saw said the TMJ disorder can cause all my problems, but it is highly unlikey that it is causing my Autophony - I can live with all my symptoms apart from the Autophony (this is my main complaint, autophony is really life spoiling).

I am in the process of seeing 2 ENTs in the coming weeks, I will of course let you know what happens.

I am sorry you are having ear problems - all I can suggest for you is - do NOT go to any old ENT, research your docs first, you really need to find a doc who is going to be helpful, don't waste your time with any old ENT, once you find the right doc for you, only then things will move forward for you (I really don't understand how some people become docs, it is VERY difficult to find a decent doc in this day and age, unfortunately).

If you cannot tolerate sounds/noises in a crowded room, this is most suggestive of Hyperacousis syndrome - you should have this possibility investigated. Have you talked about Patulous Eustachian Tube (PET)with your ENTs - you should also have this possibility investigated. Our ear problems are quite unusual, so we have to find the root cause through a process of elimination, for example, if it's not PET, move onto the next ear disorder it could be, etc, etc.

Don't give up, be strong, you will get through this, but it may be a long process, so prepare yourself. We have HOPE on our side.

Take Care,

John
[QUOTE=JohnUK;3542823]Hi San Dee,

Before I attempt any kind of treatment, be it medicinal or surgical, I need at least 3 doctors/surgeons to agree with each other to confirm the root cause of my ear problems, the super specialist I saw is convinced TMJ Disorder is playing a part in my ear problems (he even says that my ET dysfunction is causing my autophony and that TMJ disorder is responsible from my ET disorder, this can happen as proven by the lady successfully treated by Botox injections)), however 2 other docs I saw said the TMJ disorder can cause all my problems, but it is highly unlikey that it is causing my Autophony - I can live with all my symptoms apart from the Autophony (this is my main complaint, autophony is really life spoiling).

I am in the process of seeing 2 ENTs in the coming weeks, I will of course let you know what happens.

I am sorry you are having ear problems - all I can suggest for you is - do NOT go to any old ENT, research your docs first, you really need to find a doc who is going to be helpful, don't waste your time with any old ENT, once you find the right doc for you, only then things will move forward for you (I really don't understand how some people become docs, it is VERY difficult to find a decent doc in this day and age, unfortunately).

If you cannot tolerate sounds/noises in a crowded room, this is most suggestive of Hyperacousis syndrome - you should have this possibility investigated. Have you talked about Patulous Eustachian Tube (PET)with your ENTs - you should also have this possibility investigated. Our ear problems are quite unusual, so we have to find the root cause through a process of elimination, for example, if it's not PET, move onto the next ear disorder it could be, etc, etc.

Don't give up, be strong, you will get through this, but it may be a long process, so prepare yourself. We have HOPE on our side.

Take Care,

John[/QUOTE]

John,

Unfortunately I do not have too many choices as I can only see who my Dr refers me to who is in my insurance network. There have been a few I would like to see but my insurance will not cover. I have had tests done twice over the last 6 months with an audiologist. He said there is nothing wrong with my Eustation Tube. Treatment for TMJ was unsucessful. Traetment for allergies also unsucessful. So far no luck treating me for Cochlear Hydrops.

The fullness in my ears is maddening but the vibration and echo in my left ear is even worse. I get to the point I do not want to talk. When someone says what to something I have said I rely...nevermind. I have no desire to repeat myself. Oh to feel normal again. Not sure what that feels like! :(
[QUOTE=SanDee53;3542938]John,

Unfortunately I do not have too many choices as I can only see who my Dr refers me to who is in my insurance network. There have been a few I would like to see but my insurance will not cover. I have had tests done twice over the last 6 months with an audiologist. He said there is nothing wrong with my Eustation Tube. Treatment for TMJ was unsucessful. Traetment for allergies also unsucessful. So far no luck treating me for Cochlear Hydrops.

The fullness in my ears is maddening but the vibration and echo in my left ear is even worse. I get to the point I do not want to talk. When someone says what to something I have said I rely...nevermind. I have no desire to repeat myself. Oh to feel normal again. Not sure what that feels like! :([/QUOTE]


That is a shame, may I suggest you arrange an appointment with your ENT and discuss Hyperacousis and Patulous Eustachian Tube - have tests done to either diagnose or exclude those possibilities, we can take the next step after you have done that.





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