It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Ear, Nose & Throat Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-27-2010, 09:19 AM   #31
Junior Member
(female)
 
Join Date: Jun 2010
Posts: 22
hedy-446 HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Dr. Poe didn't mention the shims to me. He gave me a printout which mentioned the cartilage graft.

 
Old 10-28-2010, 05:42 AM   #32
AJN AJN is offline
Newbie
(male)
 
Join Date: Sep 2010
Location: Brisbane, Queensland, Australia
Posts: 4
AJN HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi there! I am a relatively new to the PET game, I have not been properly diagnosed but believe quite strongly that I have it in my right ear. It started around about the beginning of the year with grinding in my right ear when i turned my head and clicking in my right ear when I opened and closed my jaw and when I walk/run. I also noticed that things didn't sound the same in my right ear as they did my left, like it was duller, like a sheet was over my ear. I was popping my ears regularly as the right one felt blocked. I went and saw my ENT and because of a lack of time (I was flying to Europe, I am from Australia) he just put a grommet (vent tube) in my ear drum. It didn't fix the problem, so I managed to squeeze in a hearing test which came back normal for everything. I started getting autophony when I made certain sounds when I talked or hummed. Wearing ear plugs helped to diminish this, but you can't wear ear plugs all day can you. My ENT had no idea what was wrong with me, so I saw my GP (I didn't see him to get my referral for my ENT as he has a 3 week waiting period, I saw some other doctor) and he said he had the same problem when he was drinking lots of coffee and suggested I cut out caffeine. I have been seeing a chiropractor in some hopeful attempt that he could cure me. My neck curves the wrong way (in the forward backwards direction) so all the muscles in my neck are out of whack. I am currently still seeing him and getting massages with minimal relief (I had a massage and could have sworn my symptoms disappeared, but they quickly returned which suggests it might be muscular). So that is where I am at now.

What I am keen to know is what steps should I take in diagnosing/treating this? I think I am still relatively early in this horrible thing so surgery is a little way off yet. I love the positivity and good vibes from this thread, just reading this now has eased my mind a little bit. Any and all questions/comments are welcome Cheers!

 
Sponsors Lightbulb
   
Old 10-29-2010, 09:03 AM   #33
Junior Member
(female)
 
Join Date: Jun 2010
Posts: 22
hedy-446 HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

HI AJN-

It's so hard to know what's connected and what isn't. I have some neck, shoulder and jaw pain too but that started months after the ear. Also, I've been in physical therapy which has helped the muscular issues but has had no effect on the ear...so I'm not sure that they have any connection...except for stress.

 
Old 10-29-2010, 11:04 AM   #34
Senior Member
(female)
 
Join Date: Feb 2007
Location: Salt Lake City, Utah USA
Posts: 105
fluffyshouse HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello AJN - So sorry you are suffering like the rest of us PET people. An ENT can diagnose PET by watching your eardrum as you breath in and out of your nose. It can be seen only if your ear is patulous at the time - hearing your breathing and voice in your head. The eardrum will move in and out when autophony is present.

Excercise and caffeine can make patulous ears worse, as can hormone replacement therapy. The later can bring it one, when a person has had no signs of it before. The ear can go back to normal after excercising, when the heart slows down back to normal.

The expert in patulous Eustachian tube is Dr. Dennis Poe, in Boston, Mass. in the United States. There are other doctors around that have studied and learned under him.

If I were you, I would check at the universities where you live, in all of Australia if necessary, to see if there is an ENT who has studied with Dr. Poe and learned his methods of trying to correct PET. There are a few surgical options. People react differently to the different options. What works for one person, may not another.

I have had seven surgeries and am still not autophony-free, but have improved, even going as long as 21 months without any symptoms.

Dr. Poe specializes in the cartilage graft method. That is taking cartilage from the outer ear or inside the nose and placing it in the tissues or muscles surrounding the Eustachian tube. This surgery is done through the throat, and not through the eardrum. Dr. Poe believes in non-invasive surgery. The method that has worked best for me has been solid catheters in my Eustachian tubes, which I currently have. They consist of hospital tubing that is used when being hooked up to an IV. This tubing is then filled with bone wax to make a solid stick like thing.

I have lichen planus, which is an autio-immune disease. We are guessing that it made its way into my ears a year ago, causing my autophony to come back. But I am being treated for that, so hope to get back some relief.

Dr. Poe has improved on the catheter idea and has invented more custom made, what he calls shims. They will come in different sizes and shapes to fit peoples' Eustachian tubes much better than the plastic hospital tubing catheters that I have. Also, these shims will open up like an umbrella at the top of the Eustachian tube to prevent the shims from sliding down the Eustchian tube.

These shims have been submitted to the Food and Drug Administration here in the United States for approval. There is always a wait once an invention gets there. But once these shims are approved, it will be a very exciting time for PET people.

Dr. Poe says that after the testing period, which will be done on many people before they become available to the world, will be simple to place by any ENT, anywhere in the world. They will be cheap. He told me that a year ago, so unless things have changed, AJM, you can hope an ENT where you live will have access to getting them for you, if you still need them then. And who knows how long they will take to get to that point.

Hopefully, after testing them on different people, the access to them will be fast.

The way things are now with me, even though I am greatly improved, I will be eager to have the shims placed.

I have to say with the catheters that I have now, there is a risk of total Eustachian tube blockage, which would require a ventilation tube in the eardrum. I have had them for three years, which once I got used to washing my hair in the bathtub everyday, have been no big deal.

Like you, I feel like I have a sheet over my ears as far as hearing goes, but my hearing tests don't show that as affecting my hearing. But I know PET affects my hearing without a doubt. When I have autophony in both ears, my hearing is so distorted.

I have written way too much so had better end now. Please know that there is hope. The Eustachian tube can also be obliterated to stop autophony. It is an option I keep in mind for myself, if the new shims don't work for me. But, obliteration is permanent. You do not need to 'just live with it,' like I have been told by many doctors.

I have heard that Patu-end drops work for some people. I tried those a few years ago, but they gave me such a headache I couldn't see straight. They are made in California. Other advice that Dr. Poe gives is to stay hydrated, and use saline nose spray to keep the Eustachian tube moist. Also, do not use antihistimens (spelling?), or anything else that could dry out the ears.

Please ask any questions you have, at any time. I have been through a lot and have the best doctor, Dr. Poe to help me. I live across the USA from him, so have to fly to see him. But he's worth it. He is the greatest doctor I have ever known. He will answer your questions if you email his office in Boston.

You will not have this forever if you find the right ENT. If you feel like you would like to see Dr. Poe in Boston, make your appointment now. He books way out.

Please let me know how you are doing.

Many hugs - Cathy

 
Old 10-29-2010, 11:35 AM   #35
Junior Member
(female)
 
Join Date: Jun 2010
Posts: 22
hedy-446 HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hey Cathy...one thing that struck me about what you just wrote...my ears pop/snap when I take a deep breath...even when I don't have autophony. It's strange.

 
Old 10-29-2010, 12:18 PM   #36
Senior Member
(female)
 
Join Date: Feb 2007
Location: Salt Lake City, Utah USA
Posts: 105
fluffyshouse HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Alena,

Mine did that for years before autophony struck. And continue to do so, even when the pop doesn't go into autophony. It's the imbalance of the Eustachian tube moving, I think.

I call myself an airhead because like all PET people, we lack the necessary muscle/tissue to hold our Eustachian tubes in place. I have air there instead. (Smile) I try and have a sense of humor with this whole thing. It's important.

 
Old 10-29-2010, 12:28 PM   #37
Junior Member
(female)
 
Join Date: Jun 2010
Posts: 22
hedy-446 HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Yeah...I have the popping and snapping when I breathe and the fullness everyday as well as my voice vibrating on my ear but I only get breathing autophony every couple of days. Still....it's so annoying and I really think all my muscular issues in my neck and jaw are from swallowing and holding my facial muscles to try and equalize. I do believe this is treatable...sometimes I can't believe I still believe that after all this time, but I can't live with it. I would if I could.

 
Old 10-29-2010, 12:31 PM   #38
Junior Member
(female)
 
Join Date: Jun 2010
Posts: 22
hedy-446 HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Also my ear is clogged in the morning which I always thought was strange since most people with PET feel ok in the morning.

 
Old 10-29-2010, 03:09 PM   #39
AJN AJN is offline
Newbie
(male)
 
Join Date: Sep 2010
Location: Brisbane, Queensland, Australia
Posts: 4
AJN HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Thankyou so much Cathy for replying and taking the time to elaborate on everything, it is very much appreciated At the moment my autophony is minimal, mainly worse when I am in certain positions. I don't hear my breathing in my ear. I had a massage yesterday and that seemed to make it worse! So crazy how everything is connected. Has Dr Poe suggested Oestrogen nasal spray like I have read in a few places? I will definately give the saline spray a go!

Oh and another thing is when I roll my eyes I can hear it in my right ear. Does anyone else get this?

I am determined to raise awareness for this along the way to finding (hopefully) some form of cure or ease of symptoms. Is there anywhere I can sign up to online that is doing such a thing? I am actually an audio engineer by trade, so this really isn't ideal for me haha. It has been very tough on me mentally at times, but I am determined not to let it define me and control me. Thankyou all for your support and any future support you may give!

 
Old 10-29-2010, 03:22 PM   #40
Junior Member
(female)
 
Join Date: Jun 2010
Posts: 22
hedy-446 HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

AJN....you might want to look into SSCD...especially if you don't ever have breathing autophony. Sometimes people that have that can hear internal noises like their eyes moving or their heartbeat. You need a CT scan of your ear and a doctor who is familiar with the condition to rule it out.

 
Old 10-29-2010, 08:52 PM   #41
AJN AJN is offline
Newbie
(male)
 
Join Date: Sep 2010
Location: Brisbane, Queensland, Australia
Posts: 4
AJN HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Thankyou hedy I just checked that out, I don't get dizziness or vertigo (although not all cases present with this). Outside sounds do trigger the resonating that is the same as the autophony. I am going to get a CT of my ear just to be sure though. I am getting another hearing test early December then seeing my ENT again. Now that I am aware of both of these conditions (and will be an expert come December haha) I will be able to really discuss it properly instead of just taking his word for law on everything. Thankyou for the heads up!

Last edited by Administrator; 10-06-2013 at 02:08 PM.

 
Old 11-11-2010, 08:03 AM   #42
Junior Member
(male)
 
Join Date: Oct 2008
Location: Canada
Posts: 11
andr3w HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Quote:
Originally Posted by fluffyshouse View Post
Hi,

Once Dr. Poe determines you actually have PET, he will suggest surgery to try and fix the autophony. As far as I know, he will do surgery on any level of PET, because when I first saw him four years ago, my PET was not as severe as it is now.

I agree that the lack of posts means that people have found relief through Dr. Poe's surgeries. I am a rare case, but know that Dr. Poe will fix me eventually. The new shims come in different sizes to fit more peoples' Eustachian tubes. The catheters that I have now are just hospital tubing that is used when you are hooked up to an IV. It is placed in the Eustachian tube through the throat, then filled with bone wax.

Those catheters worked for me for a very long time, then a year ago the one failed. But, again, I know Dr. Poe is the doctor for me. I am excited about the new shim he has developed. Hopefully, it will be available by the end of the year, but I don't know.

He will do a scope through your nose to look at your E-tubes, and also look at your eardrum for the movement it does only with autophony. He takes a long time to exam you and to talk to you. It is not a quick appointment but he's so friendly and patient, I am always sad to leave him.

The shim is better fitting, and opens up at the top like an umbrella to prevent slipping. It's just so exciting that he thought of it, and I am looking forward to getting my own new set. All of my surgeries have not been failures. They worked for awhile, but it is my body's make-up that is strange, not the methods used on me. Dr. Poe has not had many failures with the catheters so you have a lot to look forward to, as far as relief.

Where do you live? Do you have far to go to see him? He is worth going around the world for. Tell him that Cathy from Salt Lake City, Utah says hello.

Please stay in touch. I care.

With friendship,

Cathy
Hi Cathy,

Just curious what you meant when you said for you the catheters worked for some time then failed. I am also anxiously waiting for the revised catheters as both of mine failed. For me after a few months one slipped and was partially in my throat so Dr. Poe had to remove it. Now after 2.5 years the autophony has returned in the other ear where the catheter is/was. I believe the catheter is still there but I think my condition has deteriorated so it's no longer effective. For the time when the catheters were in place I felt like a new person, no autophony whatsoever. I do believe strongly that this surgery is the way to go. It's nice not to feel alone in this.

Best regards,

Andrew

 
Old 11-12-2010, 09:59 PM   #43
Senior Member
(female)
 
Join Date: Feb 2007
Location: Salt Lake City, Utah USA
Posts: 105
fluffyshouse HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello Andrew. Yes, it is nice to know that we are not alone with PET. Too bad others have it, though. I know that the catheters (shims) are the way to go. After seven ear surgeries, the catheters have been the best for me.

This last spring I went on an auto-immune medication. Five weeks later, the autophony disappeared. I had a scope done through my nose to look at my Eustachian tubes and the inflammation had gone. So the theory is that the immune suppresant fixed the inflammation. Another mystery.

But now, the autophony all of a sudden came back after being relieved of it for two months. I had another scope and one ear has inflammation and the other doesn't, but both ears have autophony but it isn't all day long any more. When I cut the dosage of the immune suppresant in half, five days later both ears went wild with autophony. I increased my dosage back to what it was, but still autophony.

Four weeks ago, my right ear filled with fluid - odd for a patulous ear. But it hadn't given my any trouble for several weeks, so obviously it was blocked again with the catheter. So my local ENT removed the fluid and placed a T ventilation tube. Later that day, the autophony came back. I emailed Dr. Poe and he called back just a couple of hours later.

He was baffled as to why I had a blocked Eustachian tube, hence the fluid build-up, then it goes patulous. A huge mystery.

So he wants the vent. tube removed, which I am having done with great dread next Tuesday, and then we wait to see if the fluid builds back up again. So strange, but I have been a strange one this whole time, whose ears are not following the rules.

My catheters are both in place as the scopes have shown, but have slipped a little bit. We do not have a reason why the catheters worked and then failed, just like you.

Have you thought about having an ENT look at the tops of your Eustachian tubes to see if the catheters are still there? That is awful that you had one slip into your throat. I can't even imagine. I hate to think that our ears are deteriorating even further. Enough is enough, already.

If the new shims don't work for me, I am going to have my E tubes obliterated. A vent. tube for life is worth being autophony-free. I know what you mean about being a new person without autophony, then to have it return is going back in the dark pit.

I heard the shims are almost to the approval stage. Yay!!!

Thank you for writing to me. Keep in touch. We will get through this, and be better off for our suffering.

Cathy

 
Old 11-14-2010, 10:42 AM   #44
Senior Member
(female)
 
Join Date: Feb 2007
Location: Salt Lake City, Utah USA
Posts: 105
fluffyshouse HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Andrew,

Do you know anything about obliteration of the Eustachian tube? If so, I would imagine that our ears would feel normal, since they woud be closed all the time, and would not need to equalize because of the ventilation tubes. What do you think or know?

Thanks.

Cathy

 
Old 12-09-2010, 08:18 AM   #45
Junior Member
(male)
 
Join Date: Oct 2008
Location: Canada
Posts: 11
andr3w HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Cathy,
My apologies for the delay of my reply. From what I've been told by Dr. Poe as well as other ENT specialists regarding Eustachian tube obliteration is that it is not an ideal option. There are a few reasons for this:

1) The surgery itself is risky. It's operating in a small area right next to a major artery to the brain. If this somehow were to become cut/damaged during the operation there is pretty much no chance of survival. Apparently it's riskier to hit this artery when performing the obliteration procedure then if you are getting a cartilage graft or calcium injection.

2) The result of the surgery would mean that you would need a ventilation tube in the ear drum. Unfortunately over time you can lose your hearing with having a ventilation tube in your ear permanently from the scar tissue that builds up on the ear drum.
Iíve had ventilation tubes in my ears in the past and they can be a pain. Sometimes wax gets in them and plug it up not to mention every 6-12 months having to have the procedure done. Seems high maintenance to me.

3) Once it's done it's done and cannot be reversed. If something comes up in the future (such as better shims) or if there is some sort of side effect that wasn't known would happen at the time of the procedure unfortunately you're stuck.
For these reasons I'm not a fan of that procedure and am a huge supporter of the shims, especially when perfected a little. Cartilage graft Iím told my Dr. Poe and Dr. Elias Michaelides isnít a bad option if considering something invasive.

There are certainly many days in which I feel that I should just get the obliteration surgery done. Constant autophony takes its toll. For me itís not just my own voice I hear but breathing, pulse, joints pop etc... But I still think that I can mentally overcome this for a little while longer until I know for sure if those shims will work or not. I remember how things were while the original catheters were in place.

Take Care,

Andrew

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Roaring tinnitus - Patulous eustachian tube? paul2009 Ear, Nose & Throat 10 08-29-2011 12:32 PM
Patulous Eustachian Tube surgery Fluffyshouse crazyears51 Hearing Disorders 26 08-29-2010 02:38 PM
patulous eustachian tube after a flight wali2009 Ear, Nose & Throat 3 11-20-2009 06:21 AM
Just dx'd with patulous drive-me-crazy eustachian tube OhMyEars Hearing Disorders 16 12-18-2008 12:30 AM
PET Patulous eustachian tube - Started new therapy it's working petear Inner Ear Disorders 66 09-04-2008 11:31 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



jenni9033 (30), Titchou (12), Jenmomof2 (11), gcsjr (8), ladybud (8), LisaMP (8), mkgbrook (8), choirgirl (7), buffalonygal (6), palmtreegirl (6)

Site Wide Totals

teteri66 (1177), MSJayhawk (1004), Apollo123 (903), Titchou (847), janewhite1 (823), Gabriel (758), ladybud (753), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 06:54 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!