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 01-22-2013, 09:13 PM   #16
Junior Member
(male)
 
Join Date: Dec 2012
Posts: 10
ohmit89 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

I dont suffer from Autophony, however I am afraid I may get it after tube insertion. Although I am interested in hearing about the possible causes.

 
Old 01-23-2013, 03:34 AM   #17
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ohmit89 View Post
I dont suffer from Autophony, however I am afraid I may get it after tube insertion. Although I am interested in hearing about the possible causes.
You probably know the 2 well known causes - PET and SCDS!

The docs I have seen told me the following can cause autophony:-

- ET dysfunction (e.g, blocked, opposite of PET).
- Perilymph Fistula.
- Altered inner ear fluid dynamics.
- Altered inner or middle ear mechanics (e.g, trauma to the hearing bones).
- Intracranial hypertension.
- Intracranial hypotension.
- Thinning of the inner ear canals, doesn't have to be a hole like SCDS.

Back on topic. I am as sure as can be, that in my case, TMJ is playing a part in my ET dysfunction. Prior to my operations, I did have the clicking, it started a short time after the onset of TMJ.

Do you have TMJ?

 
Sponsors Lightbulb
   
Old 01-28-2013, 09:13 PM   #18
Junior Member
(male)
 
Join Date: Dec 2012
Posts: 10
ohmit89 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Sorry for the delayed response. I dont have TMJ according to my dentist and physio who both inspected the joint and when my jaw clicks i know its coming from my jaw - I can tell because the ear clicks are accompanied by eardrum movements (yes! i can feel it flutter). My jaw rarely clicks and only happen when i excessively yawn or yawn too forcefully to clear my ears.

 
Old 02-02-2013, 04:33 PM   #19
Junior Member
(male)
 
Join Date: Jan 2013
Posts: 37
ericb76 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Hello guys thanks for this post very informative and helpfull. I have a question for you cobrabeer about you getting your eustachian tubes closed up. I had to get a ttube put in my left ear over a year and a half ago cause of constant fluid build up in my left ear. Long story short I ended up having nasopharyngeal stage 4 cancer and the tumor messed up my left eustachian tube and it no longer works right anymore and it became PET.

I developed autophony problems on my left side because of all this and will now always have to have a ttube cause of my left PET and I already had two surgerys on my left eustachian tube with injections to fatten up my left eustachian tube to try to get rid of autophony but when my fluid drys up it comes back and goes away eventually cause the fluid builds back up and blocks up the eustachian tube for a short time.

I am scheduled to get my left eustachian tube obliterated the first of march and was wondering since you had both of yours done what are your side effects and did it get rid of your autophony?

To help on the ear tubes thing I never had any problems at first and helped when my left eustachian tube first worked before the tumor got real big and found out it was cancer. Hope to hear from you.

 
Old 02-03-2013, 12:43 PM   #20
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ericb76 View Post
Hello guys thanks for this post very informative and helpfull. I have a question for you cobrabeer about you getting your eustachian tubes closed up. I had to get a ttube put in my left ear over a year and a half ago cause of constant fluid build up in my left ear. Long story short I ended up having nasopharyngeal stage 4 cancer and the tumor messed up my left eustachian tube and it no longer works right anymore and it became PET.

I developed autophony problems on my left side because of all this and will now always have to have a ttube cause of my left PET and I already had two surgerys on my left eustachian tube with injections to fatten up my left eustachian tube to try to get rid of autophony but when my fluid drys up it comes back and goes away eventually cause the fluid builds back up and blocks up the eustachian tube for a short time.

I am scheduled to get my left eustachian tube obliterated the first of march and was wondering since you had both of yours done what are your side effects and did it get rid of your autophony?

To help on the ear tubes thing I never had any problems at first and helped when my left eustachian tube first worked before the tumor got real big and found out it was cancer. Hope to hear from you.
Sorry to hear about your situation! Is the cancer cured?

How do your docs plan to obliterate your ET?

The side effects of closing my ETs was negative pressure and my eardrums were sucked inwards, draping over my hearing bones, which affected my hearing.

The operations to close my ETs did not get rid of the Autophony because I never had PET to being with. We can't figure out for sure what is causing my Autophony, it is most likely due to an inner ear problem.

HTH! Good luck with your surgery.

 
Old 02-03-2013, 12:50 PM   #21
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ohmit89 View Post
Sorry for the delayed response. I dont have TMJ according to my dentist and physio who both inspected the joint and when my jaw clicks i know its coming from my jaw - I can tell because the ear clicks are accompanied by eardrum movements (yes! i can feel it flutter). My jaw rarely clicks and only happen when i excessively yawn or yawn too forcefully to clear my ears.
Sounds like a pain in the backside! You are not alone, there are many of us who have these weird things going on! Fingers crossed you can get it sorted!

 
Old 02-03-2013, 02:08 PM   #22
Junior Member
(male)
 
Join Date: Jan 2013
Posts: 37
ericb76 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

5Hello well as far as my cancer goes as of now its not active but I still have the tumor but it shrank to about 2 inches by 1.7 inches. As far as my. Eustachian tube surgery ent dr said they will take a fat piece from my navel area and put it into my eustachian tube then cauterize it and it will scar shut. I am worried if my chronic fluid issue will get worse and am worried about bad ear pressure etc and what else could happen. The problem I have is when my ear does not have fluid build up my eustachian tube will stay open sometimes and my voice will echo real loud through my head and I can hear my breathing which becomes very loud and anoing. I was wondering what's instore for me if I get it done. My appointment to get it done is first of march. I'm just. a little scared cause it can't be reversed once its done. I already have a t tube in left ear and said will have to have one for rest of my life once I get this done. Do you have tubes in your ears or really bad fluid build up. Thanks cobrabeer hope to hear your input.

 
Old 02-04-2013, 06:02 AM   #23
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ericb76 View Post
5Hello well as far as my cancer goes as of now its not active but I still have the tumor but it shrank to about 2 inches by 1.7 inches. As far as my. Eustachian tube surgery ent dr said they will take a fat piece from my navel area and put it into my eustachian tube then cauterize it and it will scar shut. I am worried if my chronic fluid issue will get worse and am worried about bad ear pressure etc and what else could happen. The problem I have is when my ear does not have fluid build up my eustachian tube will stay open sometimes and my voice will echo real loud through my head and I can hear my breathing which becomes very loud and anoing. I was wondering what's instore for me if I get it done. My appointment to get it done is first of march. I'm just. a little scared cause it can't be reversed once its done. I already have a t tube in left ear and said will have to have one for rest of my life once I get this done. Do you have tubes in your ears or really bad fluid build up. Thanks cobrabeer hope to hear your input.
I can understand your concerns. Have you discussed this with your docs? If yes, what do they say?

In May this year, it will be 4 years since my T-tubes were inserted, I am hoping they will stay in for many more years to come! There are reported cases of T-tubes lasting 10+ years. I have never had any fluid build up in my middle ears.

 
Old 02-04-2013, 10:46 AM   #24
Junior Member
(male)
 
Join Date: Jan 2013
Posts: 37
ericb76 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Hello cobrabeer yes I talked to my ent dr he said I will still have issues with fluid build up and said it could get worse but he didn't know for sure. He said my fluid build up will have todrain from my t tube which it already does since my eustachian tube does not open or close right. He said I will always have to have it for ear to vent etc. My main concern is the fluid and will it get worsse or be just about the same it is now. He said with eustachian tube being permanetly closed it will make fluid build up more easier to happen. That's why I asked how your doing since you had both of yurs obliterated and what all side effects do you have such as pressure or fluid build up etc. My ear tube has helped a lot since I've had it and yes if anyone reads this from what I read and my experience it never affected my hearing at all. I have lost hearing in left ear but its cause of all the constant infections I've had from the eustachian tube not working and fluid build up. All this. Came about cause of my tumor. Hope to hear from ya cobrabeer you have been a great help. Cheers guys.

 
Old 02-04-2013, 12:37 PM   #25
Newbie
(male)
 
Join Date: Feb 2013
Posts: 1
60minIPA HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Hey guys, don't mean to change the subject, but I was looking for some help/advice. I had tubes put in my ears 2 weeks ago and I have a lot of the symptoms people talk about:

- stuffy feeling in ears
- everything sounds funny (like I'm listening through a tin cup)
- I can hear my voice inside my head
- pressure

And I did hear what sounded like my pulse in my ears, but that has since gone away. Just wondering if anyone out there can tell me if this is part of the healing process, and that these symptoms will go away? My ENT didn't mention any of this, now I'm nervous that I've screwed up my ears. Thanks in advance.
cheers

 
Old 02-05-2013, 10:24 AM   #26
Newbie
(male)
 
Join Date: Feb 2013
Location: St. Paul, MN
Posts: 1
JohnMN HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

I had recent experience with tubes-- or prep for tubes-- as a possible cure for ETD. It didn't work out well for me, but I wanted to relate my experience since if yours ends up being like mine, your current issues probably will go away after the tubes come out (if not before then, of course).

I've had increasing problems with my ears-- fullness or pressure episodes that last from an hour to 4 or 5 days, ringing that comes and goes sometimes from one minute to the next (or gets louder and softer-- it's never 100% "gone"), and somewhat reduced hearing. My issues are in both ears, but worse in the left. It seemed to start after a very persistent sinus infection I had some years ago (3 different antibiotics before it cleared up-- of course, at this point I assume it was probably viral anyway since they now say about 70% of sinus infections are viral). Initially these symptoms were pretty minor but over about a 10-year period they got a lot worse. (BTW, I've never been diagnosed with sinus disease or significant sinus "issues", but that's something I probably should specifically ask a doctor about sometime, too.)

After some research, I came to believe these hearing symptoms were from ETD. One complicating factor, though, is that I do have some "garden-variety" hearing loss in upper frequencies, more so in the left ear-- not quite bad enough yet to require a hearing aid(s), but I know I will get them at some point. But both ENT's I have seen have now made the probable diagnosis of ETD also, so it seems I was right.

The second ENT who diagnosed the ETD suggested tubes (the first one kind of took a "sorry, nothing we can do" attitude towards it). He said about 60% of the people with my symptoms who get tubes like them, a small number hate them and the rest are kind of neutral on them. He said it was a quick procedure, low-pain and fairly low-risk since if I didn't like them, my ears should go back to the way they were before after the tubes came out and the holes healed. I'm not sure if other ENT's do this, but this one-- at least for adults who aren't having middle-ear fluid issues (which I don't have)-- makes the incisions first, waits a couple weeks and then puts in the actual tubes. From what I can gather, it's much more common for them to just put in the tubes right after making the incisions, during the same office visit.

So I got the incisions-- this was in late November 2012. Immediately after the left ear incision was made, I thought it was a big improvement-- the pressure seemed to be gone and I thought I could hear more, too. But I didn't notice the same difference from the right ear incisions. And by the time I got home from the clinic, it seemed to have already changed a lot-- I don't know why. Gradually over the next day or so, I ended up with symptoms pretty much as you describe:

-- "Tin cup" hearing (some describe it as hearing things from inside a bucket held underwater, or the like);
-- A return of pressure, or a full or stuffy feeling in my head-- although it was different in a hard-to-describe way from the "regular" stuffy feeling I'd had most of the time from the ETD in recent years;
-- Much more intrusive sound from my own voice than I was used to experiencing;
-- Significantly reduced hearing overall-- that is, much more reduced than what I already had from the ETD. Sitting at the kitchen table, I could just barely hear our microwave's buzzer go off, which previously I had still heard fairly easily.
-- The one thing I did NOT seem to be getting was the very changeable, hour-to-hour onset of extra "muffling" that I would get frequently in one or the other ear, usually starting with increased tinnitus in that ear. While it was nice to not have this, it wasn't nearly worth the tradeoff of having the underwater hearing sensation and significantly reduced hearing.

The ENT had said that it would take some time for the trauma of the incisions to decrease, so I didn't worry too much initially. But it didn't really get any better over the next couple weeks-- hearing still reduced significantly, etc. So when my appointment time came around in mid-December, I went in and told him that it seemed to be a definite worsening of my hearing overall. He said that in that case, of course it wouldn't make sense to actually place the tubes, and I should just let the incisions heal up.

He said I should make a follow-up appointment for later to discuss other options-- including the ET dilation procedure, which another ENT at this same clinic does perform (might be the only one in MN currently doing it, according to the first ENT).

By another 10 days or so after the second appointment, my ears seemed to back to their "normal", so the incisions must have been completely healed by then. I can now hear the microwave buzzer better again, etc. There also seemed to be some delay in my old symptoms-- the changeable muffling preceded by louder tinnitus-- coming back. But by now, about 5 weeks after the incisions seemed to heal all the way, those symptoms seem to be back full force again.

I'm not a doctor or a physicist either, but my own best guess as to what might have happened is that the pressure relief out the eardrum incisions might have caused a further "collapse" of the Eustachian tubes, worse than they were before?-- from some air that was keeping the ET's partly open being able to vent out the eardrum instead? However, I don't know if this makes sense to anyone who reads this board and I might be "all wet" on that theory.

I haven't yet made my follow-up appointment. I wanted to make sure about whether or not I wanted to do the ET dilation thing before I go back in-- and if I'm not prepared to have that done, I probably won't go back in at ALL because I don't think there's any other possible cure for this. If I thought the dilation was a "for sure" cure or even 90% for-sure, I'd definitely do it. But while the early study or test results on this procedure look pretty good, it's probably less than 90% sure anyway.

But right now I'm leaning towards giving it a try, since up to now few people are reporting "permanent" negative effects from it. I know some have said that serious autophony-- something I certainly wouldn't want-- is a risk, but in the test subject results available online I haven't seen any mention of anyone complaining of that. So it sounds like a very low probability. In theory there is also some risk of having your internal carotid artery damaged, but as far as I know this has never actually happened so far (but of course the procedure doesn't have large sample numbers yet). If this did happen, I assume it would be fixable since you're already lying in an operating room; however I'm not sure about that-- and perhaps it's a big deal and very invasive to fix it, I don't know. But again, I'm guessing the odds are lower than my odds of dying on my freeway work commute, so I don't know if that would stop me from trying it.

Anyway, that's my story and sorry for the length of this post. I mostly wanted to tell you that in a worst-case scenario, if your symptoms do NOT go away anytime soon, they probably would go away after the tubes fall out and your incisions heal-- since they sound similar to my situation, anyway. Or maybe if it's not better in a month or two, you could even have the tubes removed?-- I'm not sure if ENT's ever remove those tubes, but I'm guessing they could if someone disliked them enough.

 
Old 02-05-2013, 08:06 PM   #27
Member
(female)
 
Join Date: Jan 2013
Posts: 60
JenPlus2 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Hi John-
I posted on this thread about ET dilation. I had this procedure done in June 2012 after 6 months of ETD, prevalent mostly in my left ear. I tried everything, including PE tubes and had similar experiences to what you described. Here's the thing about et dilation: it works, but you must treat the UNDERLYING CAUSE of the ETD. Everyone is different. For some, it's sinus disease, for many it's allergies. Other things can be going on, the point is, you need to find out what caused your ETD in the first place.
I had this procedure done in June and woke up to a clogged ear sensation (left) in mid September. I could pop my ears to no avail, nothing helped. I saw the ent who did my dilation, and he told me to get more aggressive about treating my significant year round allergies. I had done a test earlier in the year, didn't really do much about it because I was so preoccupied by the ears. Once my ears got better, I forgot about treating my allergies. I started with an aggressive allergy regimen, including allergy shots, at the end of October. The clogged feeling slowly disappeared over the next month too, though I'm not sure if it was related to the shots, since they take time to take effect. The clogged feeling did go away though, in total it took about 2 mos. I continued with the shots, had to miss some in December due to being sick (you can't receive them when you're sick) and in January the same darn clogged left ear feeling started again. I can pop my ears till the end of time, however, it doesn't change the 'clogged' feeling. It's very disheartening and annoying. I've had several tests done to check the function of my e tubes (audiologists can do this) and they come back ok. Makes no sense. I'm currently trying to figure out why this keeps happening. I have no sinus disease, just chronic allergies, which I work hard at controlling. My dr is sending me to a neurologist to see if it could be something like migraines. If that doesn't pan out, I'm going to be evaluated for tmj disorder. I noticed that I get tightness and numbness in the area of the tmj joint just in front of my left ear alot lately. I guess we'll see.
Anyhow, here's a firsthand account of the ET dilation procedure, as I had mine done in office without anesthesia, just local numbing spray: I came in, we went back to the room, the dr drenched these tampon (sorry) looking pads into a numbing solution, and placed them up thru my nose into the nasopharyngeal openings of the e tubes. I waited about 20 min to get all numbed. Once I felt numb enough, he used a very very slim catheter with the tiniest balloon you can imagine inside the tip to go up my nose and VERY PAINFULLY into the e tubes. My left ear was the only ear showing dysfunction at that point, so he did the 'dilation' twice on that side (this is normal for this procedure). Owwwww! He did one dilation of the right side to make them 'even'. I felt NO RELIEF directly after this procedure. I thought I'd done something terrible to myself. I guess I expected a miraculous cure. It turns out it take about 6 wks for the swelling to go down. It did. And I felt better. I had occasional episodes of patulous Eustachian tube (tube gets stuck open, you hear your own bodily sounds inside your head, scary) and had to hold my nose and suck in many times to abort these episodes. It was a heck of a healing process.
That said, I think if your ETD bothers you terribly, this may be the procedure for you, but remember its more invasive than even PE tubes, and the effects if any are adverse, may not be reversible. No one told me I could get the opposite of ETD, patulous Eustachian tube disorder, from this procedure. If you think about it, the possibility makes sense though, because they're widening the tubes. Too much and they could stay stuck open, causing PET. Those episodes were very scary that I had. Please know that not everyone who has this procedure will experience this. I just believe in being as informed as I can be about anything that could radically change my body. That all said, I am very glad I had the dilation done. It saves my sanity when I've had these reoccurrences but can now at least pop my ears like a normal person. And know they aren't 'clogged'.
In addition, I'd recommend that you speak to the ent that does this procedure and find out all the specifics including his success rate, etc. I'd say if you can have this procedure done in office while awake it might be preferable to general anesthesia because the dr has your feedback whether or not to adjust the amount of dilation.
Please feel free to ask me if you have any questions!
Jen

 
Closed Thread




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), mkgbrook (8), ladybud (8), LisaMP (8), gcsjr (8), choirgirl (7), palmtreegirl (6), buffalonygal (6)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 04:24 AM.



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!