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Old 07-26-2013, 04:35 AM   #1
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Meira HB User
Eustachian tube dysfunction

This is my first visit to this site and I hope someone out there has advice for me. I was diagnosed a couple of years ago with Eustachian tube dysfunction and what they call "glue ear" here in the UK. After trying the Otovent, a sinus rinse, and a steroid nasal spray with no relief, I had grommets (called simply "tubes" in the US) put in last year. The grommets didn't completely eliminate the feeling of fullness in my ears, and in addition, I was experiencing autophonia, where my own voice and breathing were amplified in my head. As the autophonia was driving me crazy, I had the grommets removed about half a year ago. At that point my ENT prescribed a stronger steroid spray (Avamys), and I was doing all right... still some sensation of fullness in my ears, but nothing like what it had been before. However, about a week ago the glue ear symptoms returned in force, and I am once again miserable.
The return of the symptoms coincided with my returning to swimming - something that I used to do on a regular basis but had not done since the grommets were put in. A quick internet search revealed a study showing no relationship between swimming in chlorinated water and Eustachian tube problems... but the fact that somebody did a study on this suggests that there may in fact be some evidence for a connection.
I should also mention that I suffer from tinnitus, and I snore loudly (something my husband notices more than me!). The ENTs I've seen say that the snoring and ear problems are not connected, and as the snoring seems to originate in my palate, I believe them. The tinnitus started around the same time as the ear problems. (Both built up slowly over about 6-7 years before I even saw a doctor for them, as I was dealing with other things at the time and neither the tinnitus nor the glue ear interfered with my daily life until a few years ago.)
If anyone has any advice - and particularly on the return of glue ear / Eustachian tube dysfunction after the removal of grommets, and/or on any connection with swimming - I would be very grateful!

 
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Old 09-18-2013, 01:40 AM   #2
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Marie 67 HB User
Re: Eustachian tube dysfunction

Sounds like since the tube is out your ear isn't draining thru your e-tube. That is what just happened to me. Had to have a myringotomy. Am afraid fluid will return since there is no tube present. How did yours first start? Mine was a sinus infection and about 10 days later the ear infection. Fluid in the ear drives me insane. I have developed psychological problems from this issue since it has been going on for over two months. If the fluid doesn't return after awhile I think I will be able to readjust back to my old self but until then, I am in a terrified state of mind. These ear issues cause alot of people to get obsessed by them since they are so close to the brain and its functions. It can definitely cause a psychosis. It sounds like your dealing with it alot better than I have. The decreased hearing ability, off balance feeling, it was also difficult to talk with the fluid in my ear due to the way I sounded to myself. I would rather just go ahead and die as have to live what I have lived thru these last two months again. How long does it take for fluid to build up again in the ear?

 
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Old 09-18-2013, 02:07 AM   #3
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Meira HB User
Re: Eustachian tube dysfunction

Dear Marie -
I wish I knew where to start! It sounds like you're having a really difficult time adjusting. It's awful, isn't it. I agree with you, the worst part is how you sound to yourself when speaking. I find that my hearing isn't affected, but I have to concentrate a lot harder in conversations because I am thrown off by the odd-sounding nature of my own voice. It's like talking to someone on the telephone - but the person who sounds like they're on the phone is actually yourself, not the other person. Even that doesn't quite capture it... There's no way really to describe it. It's just unpleasant and disconcerting.

Unfortunately, I am coming to the conclusion that the only solution is to adjust to a new reality. There is no cure or fix for this problem. I have been trying chiropractic on the off-chance that loosening up my cervical vertebrae would make a difference, but it doesn't seem to be doing anything. The chiropractor has also been using craniopathy - trying to adjust the cartilage and bones that connect the jaw and ear - but that has had no effect at all.

You asked how my problem began. I don't actually remember, because at the time I was focusing on other things. This was about 8-9 years ago, and I do remember the problem started intermittently in one ear, and only gradually became permanent and in both ears. At the time it started, I was suffering from terrible facial pain which was eventually diagnosed as migraines. Because the pain was in my face, I didn't think to call it a migraine or even headache. I thought it was related to my sinuses, stress, jaw clenching, eyesight... all sorts of things. It took several years to get a proper diagnosis. The doctors I've seen (neurologist and ENT) seem to think the ears and migraines are not connected, but I wouldn't be surprised if they turned out to be related after all. Both are areas where medical science still has a lot of work to do.

Good luck to you. I would advise you to see a psychologist or psychiatrist to help you get through this, until you become more used to it. Maybe an antidepressant would help, even just for a little while. Take comfort from knowing that you are not alone, and that it is possible to live with this. We humans are incredibly adaptable and can get used to a great deal. In the meantime, keep seeing doctors and trying different ways of alleviating the problem. Maybe yours will turn out to be more tractable - who knows! I'd be happy to hear how you get along, and wish you the very best with all this.

 
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Old 09-21-2013, 10:27 AM   #4
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Marie 67 HB User
Re: Eustachian tube dysfunction

Thanks for giving me some encouragement. It helps just communicating with you about it since you are having similar issues. Nobody else seems to understand these ear issues unless they have them. Do you feel like you have lost some hearing? I still can't hear right out of the fluid logged ear. It felt ok the first day or two after the myringotomy but I started having the same symptoms again of decreased hearing, off balance and pressure. That is why I think the fluid has returned. I know that this happens often as even the ent admitted so. What is most bothersome is the decreased hearing. I feel like I have lost 25-50 percent of hearing ability in that ear. How did you feel when you had the glue ear? Did you have any similar symptoms like mine? How was your hearing before you had the tube in? Did you have the autophony before or after getting the tube placed? What scares me about not having the tube is the fluid damages the bones in the middle ear after awhile if it won't drain out on it's own. So if your eustachian tube is closed then your in trouble. I believe that is where I am at with my condition. Did you have any glue ear problems when the tube was in? How long after the tube coming out did it come back? I know you said that you were swimming. I was just wondering what the timeframe was. I've heard that sometimes you can have a tiny hole in your eardrum from the tube that doesn't heal. If this happened, that could explain why after you started swimming again that your ear started retaining fluid. I've read that ent's can miss this sometimes if the hole is small enough. I read about it on these healthboards but I can't seem to find it again. I'm trying to get more information about a new technique to open up the eustachian tubes called balloon dilation. I believe that it is done in Geneva as well as a couple doctors here in the states. I communicated with a woman who had this surgery and she said that she suffered from etd for 4 years. She had this surgery twice and she says that it popped open her head. Her hearing was closed off just like mine is. She states that she got her life back because of it. If my ear would open up and I could hear normally again, I would say the same thing. I keep praying for this. I have written to one of the doctors here in the states that does this surgery. I hope that he answers me. I have no insurance at the moment but I am going to get some just in case, so that I could have this surgery if a doctor is willing to do it. It sounds fairly simple like opening up a clogged pipe. I know in the UK everyone is covered for medical treatment. I find it frightening that there is no cure for this accept losing hearing and suffering. Let me know your opinion on this surgery. There's things on the web about it. Thanks for listening to me.

 
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Old 09-23-2013, 10:45 AM   #5
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Meira HB User
Re: Eustachian tube dysfunction

Hi Marie,
I got very excited when I read your post and saw what you wrote about balloon dilation. I thought, wow, is there a new treatment I haven't heard of? So I googled it, and <read that> balloon dilation of the e-tube is actually quite risky - with potential for stroke and death - because the e-tube is right next to the carotid artery. That sure punctured my balloon quite quickly.

It still may be worth looking into, especially if you find a center where they do it on a regular basis - but I doubt it will be covered by insurance. As for medical coverage in the UK, forget it. The NHS (National Health Service) here is extremely conservative and wouldn't cover such a new and risky procedure. Aside from that, the NHS is on a skeleton budget and only the most fundamental services are covered these days. (Don't let anyone tell you a British-style national health system is better than a combination public-private system. The coverage is terrible and waiting times are horrendous. But that's another story.)

Regarding your other questions - I began getting the autophony after the tubes were put in. This is apparently a side-effect of the tubes that I was not told about. I had the tubes removed about half a year after they were put in, and the glue ear started to come back about 6-8 weeks later. I was using a steroid nasal spray during that time and the ENT assumed that the steroid spray was keeping the glue ear away... but I think now it was just coincidence, or luck. Throughout all this, even with the glue ear, my hearing tests have been showing no hearing loss, so in my case at least the trouble with my hearing is more how I perceive it than something objectively happening. If I concentrate I realize that I actually do hear as well as I ever did, but the sound of my own voice is distorted (though not quite the same way as when I had the autophony), and I have constant tinnitus. The distortion of my own voice and the tinnitus make it very difficult to have conversations in a nor
mal way.

Meanwhile, my glue ear is definitely getting worse. I find that I can judge how bad it is not only by how it feels internally, but by the distinctive odor it produces. Do you experience that? Rub inside your ear with your finger and then smell your fingertip. When I first experienced that odor (over the years before I had the tubes put in) I didn't realize it was connected to the glue ear. (Well, for most of that time the glue ear wasn't actually diagnosed - so that's logical.) Then when the tubes were put in the odor went away, and I made the connection. Now the odor is getting stronger again ... along with the sense of fullness and blockage.

Let me know if you find out more about balloon dilation. Wouldn't it be great if there was a solution, even an expensive one!!

Last edited by Administrator; 09-23-2013 at 11:48 AM.

 
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Old 09-25-2013, 09:54 AM   #6
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Marie 67 HB User
Re: Eustachian tube dysfunction

Dear Meira,
I looked up the balloon dilation technique. I communicated with a woman on the boards who said that she got her life back from this procedure. Someone else who had it done by a different doctor told me that she was having symptoms of patulous eustachian tube after the operation. This happened several times and really scared her. I know that I would be feeling the same way myself. I can't think of much worse. It is that tormenting. I didn't know there was such a thing until I read about it on these boards. Do you experience autophony if you don't have grommets in? What do you think started causing you to have the ear problems since a few years ago? Did you have a cold or sinus infection that might have started it. That's how it has started for me. Do you feel like you have any hearing loss? Are you going to get the grommets put back in? Have you ever had glue ear just drained out and no grommet put in? That's what was done to me. I'm not so sure that it was a good idea because it's been over a week and I'm still not hearing normal. Has your doctor ever told you what the chances are for the fluid re-accumulating again quickly in an ear without a tube or grommet? I've asked that question on the boards here and haven't been able to get a response. When you had the grommets in did any fluid accumulate then? I had them when I was ten but I had no side effects from them and no drainage. There is also a doctor over in Geneva at the Eustachian Tube Institute that does this dilation surgery. I don't know if that helps any or not. I have to have a hearing test in two weeks and if I have conductive hearing loss then I am going to need a tube. Judging from the way I feel, I can almost bet that I do and that I will have a tube placed. If there's anything advice about the grommet that you have for me please post as I'm concerned about possibly having to have it. Take care and bless you. Marie

Last edited by Administrator; 09-25-2013 at 03:15 PM.

 
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Old 09-26-2013, 12:52 AM   #7
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Meira HB User
Re: Eustachian tube dysfunction

Hi Marie,
I only experienced autophony when the tubes (grommets) were in, and again when I had a punctured eardrum due to an infection (that scared me but it healed pretty quickly). It's because of the autophony that I had the tubes taken out. I don't want to get tubes again, because I don't see the point in fixing one problem just to introduce another. I had no fluid with the tubes, and I may have felt a bit better with them than without them, but not better enough to make it worth going through the whole procedure again. I don't like the idea of constantly putting holes in my eardrums! I have never just had the glue drained out without putting tubes in. I will discuss that with the ENT when I next see him, which won't be till January (waiting times on the NHS are horrendous). I'll also discuss balloon dilation then as well. Maybe you're right and they will cover it here, although as far as I can tell the NICE guidelines say the procedure can be done only in the context of research. Maybe I can try to get onto a study. I will have to think hard about it, because of the risks. I don't want to do it with someone who hasn't done lots of them already!! I don't think flying to Geneva is an option for me - but I had no idea there was a whole E-tube center there. That's good to know. You've clearly done a lot more research than I ever did!
You asked what happened to start my problem... the truth is, I have no idea. It was so long ago, and I was focusing on other things at the time. The main health issue for me at the time was my migraines (these took forever to properly diagnose, because I was experiencing them in my face). Also, my children were very young when my problems began, so I was busy with them and just kind of assumed my own health issues would work themselves out. So maybe it all started with a sinus infection or something like that - but I have no way of knowing.
I think autophony is a potential side-effect of grommets, but it doesn't happen to everybody. So maybe you will be lucky and the tubes will resolve things for you. There's no way to know until you try. Good luck!
Meira

 
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Old 09-26-2013, 07:49 AM   #8
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Marie 67 HB User
Re: Eustachian tube dysfunction

Dear Meira,
When you had the migraines were they above your eyes and right in between? Did you have pain below the eyes like right in the center of your cheek? If so, those are sinus headaches. I've had them many times as well as the old fashioned headaches. I use to have headaches every day until I went to a chiropractor and found out I had neck problems. How long did your grommets stay in? Did you have your hearing tested with them in or without them? How is your glue ear now? Do you notice any hearing difference when you have it? What can you tell me about the UK health system? Here in the states they are starting something that is probably going to function like it does. Everyone's concerned about the access to doctors once this changes and I am afraid the waiting time to see one will be drastically increased. What are your waiting times to see doctors and how do you go about doing it? Marie

 
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