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Old 08-14-2010, 11:25 AM   #16
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello Alena,

I still wear my mouth guard and also take clonazapam, which relaxes me when I sleep. I am crediting that medication for helping with my TMJ/TMD problem.

I found that if I didn't take it before sleeping, I would be awakened by the slamming down of my mouth/jaw as I drifted off to sleep. I still get a few aches and pains in my jaw but nothing like before.

I, like you, attribute my jaw clenching to the stress of autophony. That, I am absolute sure of. So when our ears are fixed, so will our jaw be. Yay!

I am really excited for you to see Dr. Poe and begin your way back to healthy ears.

Hugs,

Cathy

 
Old 08-14-2010, 02:14 PM   #17
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Yeah...I usually take a muscle relaxer or an Ambien to help me sleep too. I think I'm going to hold off on the guard though. I think my issue is more muscular....it actually seems to hurt more during the day sometimes. I think I'm not talking and swallowing normal because of my ear and it makes my face muscles tired.

I'm with you.....I can't wait for this to be over. I'm hoping it will be by the end of the year!

 
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Old 08-14-2010, 04:03 PM   #18
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Mine is muscular, too. I don't know if my guard is doing any good or not. I am on my second one because I didn't think my first one was doing any good.

I think the medication helps more than the guard. But the bottom line for you and me is to get rid of the autophony stress. It runs and ruins our lives.

I see an end to it, though, and hopefully, like you said by the end of the year, or better yet, sooner.

Good luck with your appointment. Please let me know how it goes.

 
Old 08-14-2010, 04:19 PM   #19
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

I agree! I was just dreaming that I was chewing on metal and clenching on the guard and I think it made the pain worse. The drugs help and so does exercise, which I try to do even if it does cause my ear to act up. Usually it's tolerable as long as I drink a lot of water.

Just a little over a month until I see Poe. I just hope that if he does offer me surgery I won't have to wait too long....it's been so long already, you know?

 
Old 08-15-2010, 10:56 AM   #20
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

We all usually have to wait for Dr. Poe, but it's because he's the best and worth it.

I have two mouth guards. One that covers my entire lower teeth - the newer one. And one that fits just on my two front teeth so if I clenched, my molars never touched.

The first one, when I clench, my upper teeth all touch the guard. I don't know which one is best. Every dentist has their own opinion, and in the meantime we are spending a lot of money on opinions. And nothing may help but time and us figuring out what is best for us.

Have a fun trip to Boston.

 
Old 08-19-2010, 06:18 PM   #21
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hey Cathy-

Out of curiousity, I know you have talked to other people over the past couple of years that have PET and have had various surgeries from Poe, Shea and others. Do you still keep in touch with any of them and if so, are they doing well?

Alena

 
Old 08-19-2010, 11:00 PM   #22
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi,

The ones I keep in touch with are all waiting for the new shims. They still suffer. They don't live in the USA, so they have no doctors who know a lot about PET.

Take care, Alena. Thank you for writing.

Cathy

 
Old 08-20-2010, 10:08 AM   #23
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Sad! I talk to a couple of people in Europe with this problem too.

Well...I have a month to go before my appointment. Hopefully the shims will be approved by then!

 
Old 08-21-2010, 02:11 PM   #24
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Cathy-

Sorry to keep bothering you....it's been hard to get any info from Poe's office....I'm not sure if he is not really back yet or is just super busy. I know you said the people you talk to are still suffering. Do you in fact know that Poe has had success stories? Are there people who have had various procedures done by him and they are better? It just seems like there isn't one success story online and it's so hard to keep my spirits up.

 
Old 08-21-2010, 04:27 PM   #25
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

You are never a bother. Keep your spirits up. You will get better. That is the attitude that I am keeping for myself. I have to. That is why I keep trying new ideas. One is going to work someday. And you will find one, too.

I don't know what kind of info you are trying to get from Dr. Poe's office. But you will know more when you see him. He takes a lot of time with his patients. Make a list of your questions.

Dr. Poe has absolutely had many, many successes for fixing PET. A lot of us have wanted to read them on Healthboards, too, but why should they post when they are fixed and happy?

My catheters worked for 22 months, and I didn't even go on to Healthboards to see what was being written, except to say that I was doing really well with the latest surgery.

The reason why I didn't keep posting was because I didn't want to talk about it any more, until recently when I saw your posts. I wanted to put it all behind me since I was autophony-free for so many months.

Back to Dr. Poe's successes, a simple injection of Radiesse has fixed his patients, silicon plugs have, the cartilage grafts have, the hospital tubing catheters have. That is what I have now, and they were great for the 22 months, and even though I am totally autophony-free all day long like I was, I am so much more improved than before he put in the catheters.

It all depends on the person and their Eustachian tubes, and other bodily factors. As you know, everyone is different. Eustachian tube dysfunction is very difficult to treat whether it is patulous like ours, or the opposite.

I am so thankful beyond words for doctors like Dr. Poe who keep trying things to help us. There are other doctors who treat PET, too. It's so rare, and those doctor don't have to work on us, but because they really care, they try different things to help. There is a new study in Canada where they are using a blue putty type stuff, that is pressed against the eardrum. That sounds really odd, but it is helping people. It stops the vibration of the eardrum. But it's new, so I don't know much about. it.

Stay positive and be happy that your appointment is just around the corner. It will be okay.

Hugs.

 
Old 08-21-2010, 04:31 PM   #26
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

All I can say to you is God bless you and thank you for this information. From me and all the other people that are suffering that I know are reading this.....thank you so much!

 
Old 08-21-2010, 04:34 PM   #27
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

You and everyone else reading, suffering and hoping are worth it. Thank you for the thank you.

 
Old 10-24-2010, 02:24 PM   #28
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Alena,

How was your appointment with Dr. Poe?

Cathy

 
Old 10-24-2010, 03:28 PM   #29
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Cathy-

Thanks for checking in with me. I really liked Dr. Poe. He said I do have PET but he didn't think the pressure and clicking I was feeling was from it. He thought that was from TMJ. Unfortunately, I've been in physical therapy for TMJ for a month with no real results and the doctors I've seen for TMJ don't really see a problem there. I'm going to see the TMJ specialist that Poe recommended in Boston for the final word on that.

I do have a follow up scheduled with Dr. Poe, but the earliest I could get was January so it's very frustrating.

I don't have a lot of breathing autophony these days...just vibrations on my ear from my voice, near constant fullness and popping and clicking...especially when I breathe, talk and swallow. I'm wondering if a tube might actually help me given my circumstances.

How are you doing?

 
Old 10-27-2010, 09:41 AM   #30
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Alena,

I don't know if vent. tubes in your eardrums would help with the fullness and clicks. I also have the fullness or the feeling that my ears need to pop, but not as much as I did when PET first began. I am having it now since my ears have been acting up again.

When I had vent. tubes before I saw Dr. Poe, I still had the feeling of fullness. But maybe you wouldn't.

I am glad that you liked Dr. Poe. Are you a candidate for the shims, when they are approved? I heard that an adjustment had to be made to them, and are back with the FDA again. I wonder if that delays their approval.

One of my ears filled up with fluid because I no longer had the vent. tubes. I had to have it drained on Monday and a new tube placed in my eardrum.

Keep me posted on how you are doing.

Cathy

 
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