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Old 01-07-2013, 04:57 PM   #1
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Adult PE tubes for Eustachian Tube Dysfunction

Hi all,

After a developing an ear infection from a serious sinus infection and taking a flight, I have developed Eustachian Tube Dysfunction. Hearing is 100% or close to 100% but I have a stuffed cotton ball feeling in both ears, on and off, plus clicking everytime I swallow and yawn.

I can Valsalva both sides and it seems to change the stuffiness feeling but I can never equalise it properly so it is even on both sides. One ear is always stuffier than the other.

This leads to me wanting to clear my ears every 30 secs - something that is driving me crazy and leaving me with a sore jaw.

I am hoping to try PE tubes for my condition but for those who have taken this path Can you answer some of my questions? From reading other posts I have gathered that:

1. Tube insertion does not guarantee instant relief - there is a settling period of 1wk to 1 month for the stuffness to go away - but generally the tubes help once the drum heals around the tube

2. Possible changes in hearing? - noticeable changes in self perception of own voice? echoes?

3. My question is that with tube insertion - for those whose ears click when swallowing and yawning - does this go away after the tubes are inserted?

I cant figure out if my OCD ear clearing is resulting from my ear stuffiness or the clicking.

Thanks for your advice!
Tim

Last edited by ohmit89; 01-07-2013 at 08:57 PM.

 
Old 01-12-2013, 01:23 PM   #2
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Re: Adult PE tubes for Eustachian Tube Dysfunction

I definitely feel your misery! I joined this board last year when a sinus infection caused Eustachian tube problems for me and found lots of useful info and a few friends to commiserate with as well. Here's what I have to say about adult PE tubes: if it's not a fluid problem, they should not be placed. This is coming from my own experience and from a different ent that I saw much later and after the fact of the tube being placed. Honestly, I was desperate enough to try the tube and it wasn't a good idea. It doesn't affect or heal an improperly working Eustachian tube. All it will do is aerate your middle ear space. Your Eustachian tube will still be blocked. In my personal experience the hearing difference was not worth the tubes to me either. It's going to be your call though. Months after I got the tube removed (tried it on 1 ear) I saw an ent who was very adamant that PE tubes only be placed when there is a fluid problem in the middle ear. He was very informative, what he said made sense, and I liked him. What I did do that helped my Eustachian tubes start to return to normalcy was get eustachisn tube dilation. It's a procedure that's definitely very rare and controversial in the ent community. I guess desperate times call for desperate measures though. They basically pop your ears from the inside with a tiny balloon catheter up your nose into your Eustachian tube. I'm not saying this is the procedure for you, just telling you what I did. I still get Eustachian tube craziness. I was allergy tested and allergic to most of the things. I began allergy shots in October and was unable to receive them for 3 wks due to being sick and went back this past Monday. Lo and behold, Tuesday I had a raging headache and ear pressure. I am able to pop my ears, it sounds like you can too. I couldn't pop my ears at all prior to my surgery so it did help. I had Eustachian tube function testing in October 3 mos after the procedure and Eustachian tubes were working
fine. I feel them open when I swallow right now actually. So basically it's a trial and error game. I feel that you should probably try any other route than PE tubes. The ent that I saw was one at a top teaching hospital in Chicago. Maybe allergy testing, Eustachian tube function testing ( done by an audiologist who knows how to perform this test). I know the misery firsthand, but it can improve.

 
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Old 01-13-2013, 08:31 PM   #3
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ohmit89 HB User
Re: Adult PE tubes for Eustachian Tube Dysfunction

Hi and thanks for the reply, i have heard of eustachian tube balloon dilation but I dont think anyone performs the procedure in Australia. When you mentioned that tubes are not worth the hearing difference - what exactly is this difference? hearing loss or autophony? my current ent mentioned that he had some of his patients complain of autophony after tube insertion - hearing yourself talk very loudly. And during the time you had the tubes did you experience the fullness feeling?

I am due for allergy testing in March - will see what the allergy specialist has to say. Do you find that the allergy shots help at all? or too early to say?

Desperately trying to find a cure. Being able to valsalva both ears does not get rid of the clicking and popping at all.=[

 
Old 01-13-2013, 08:53 PM   #4
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Re: Adult PE tubes for Eustachian Tube Dysfunction

In speaking of the hearing difference I mean that I literally felt like I should be deaf in that ear. I would keep covering the other non tubed ear to make sure I was still hearing. I kept getting mad at myself for getting it done. It was for me a complete nightmare. What I do know is this- it's rare for people like us with ETD symptoms to be able to valsalva successfully at all (experience). This is what keeps me sane when this is acting up. They aren't clogged tubes, they are just sluggish or inflamed. Tubes were designed to help those with middle ear fluid problems because long standing middle ear fluid can erode the middle ear bones and cause permanent damage that can only be repaired surgically. Pressure problems are looked upon by the medical community as an inconvenience but not hearing threatening. This is my opinion based on a year of experience with this. Since you're able to valsalva, I wouldn't even recommended the Eustachian tube dilation if they had it out by you because it does carry the risk of causing patulous ETD which is permanent autophony and heartbeat/body sounds. I actually had brief episodes with patulous ETD shortly after my surgery during the recovery period. It was pretty scary. Thankfully it didn't persist. But it could have. Has your dr given you any other options? Has he/she suggested what they think is the cause of your ETD? Honestly I think it's inflammation, not enough to close off the e tubes, like for some people, but enough to create that pressure sensation that is god-awful. What else have you tried to alleviate the problem?

 
Old 01-14-2013, 07:50 PM   #5
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Hi Jen,

I just spoke to a new ENT today and both specialists suggest that I go for sinus surgery(CT scans show extensive sinus disease), with the hope that it will help my ears. but the worrying thing is that neither of them promise that this will definitely help my ear pressure. However, the new ENT is open to putting ear tubes if the pressure problem does not go away but since reading your advice I am reluctant to try tubes at this stage.

Will see what allergy shots can do for me in March. It won't be until November that I can do any surgery since I still need to serve my 1 yr waiting period for my private health insurer.

Right now to deal with the ear pressure I do the following:

Saline sinus rinse- seems to temporarily get rid of the clicking for 20mins then comes back later
Nasonex sprayed 90 degrees to the face to try and 'hit' the eustachian tubes

Valsalva when ears feel extremely plugged.

with these I can get through the day

Do you ears click loudly when you yawn or swallow?

 
Old 01-14-2013, 08:21 PM   #6
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Yes my ears do make a click which I'm told is the normal action of the Eustachian tube opening for a brief moment to equalize air pressure in the middle ear space. I'm not an ent but have a year of experience in dealing with this and honestly I've learned so much about the middle ear system and Eustachian tubes and sinuses that I probably should go to med school lol. I'm almost positive the click is ok, it's because the Eustachian tubes are lined with mucosa similar to the nasal passages/sinuses. They're 'sticky'(mucusy) so they make that click-y little sound when they open. I might not be right, but that's what I've been told by ENTs out here. Also it sounds like you're on the right track with your drs. I just saw my allergist today and he took a look in my nose and saw severe inflammation and swelling for no reason- no discharge at all, basically clear except for the stupid swelling. He told me not to get my shots today and prescribed 40mg prednisone for 5 days to hopefully eliminate the swelling. He told me what I've been told for awhile by many drs- that sinus/nasal swelling and pressure put pressure on the ears. For us, our ears feel the pressure but aren't actually blocked. Good and bad I guess. I'm trying not to valsalva too much because resourceful me visited a scuba forum ( these guys know their ears!) and spoke with an ent scuba diver(I'm not kidding!) he told me to just have my Eustachian tube function tested by an audiologist to ease my fears because repeated valsalva is traumatic to the middle ear over time- something about it being a sudden pressure change, barotrauma maybe? I can't remember. But you say you do it infrequently so that's good. I'm thinking you will find some relief via your sinuses or allergies or both. I was referred to a sinus specialist today and am ready to take whatever advice he has to give within reason. I'm tired of this ear thing coming back and it always seems to coincide with my sinus flare ups. I wonder if your dr could try you on a course of prednisone to see if you respond and your ear pressure improves. Also I'd definitely call around to some audiologists in your area and ask if they are able to do Eustachian tube function testing. I don't know about the costs out by you, but I paid out of pocket for my Eustachian tube testing and it was no joke $26USD. Basically it tell the audiologist if your e tubes are responding appropriately to pressure changes. It took 10 minutes and definitely eased my mind a bit. In fact, I'm going to repeat this test tomorrow so I can have an updated copy to bring to my sinus specialist appointment. Hopefully my test comes back normal again. I'm sorry you're waiting so long for insurance- I get it. My husband lost his job in September and we had to get Medicaid(public aid health insurance). Luckily it's not too bad, it's accepted at more and more places. I see my allergist at a top hospital (Loyola) in Chicago. But sometimes I have to pay (the audiologist). Hope you're doing ok. My husband said today this is like solving a murder, taking and following any and all leads to find the right answer. I kinda hope we can figure it out sooner rather than later!

 
Old 01-14-2013, 08:52 PM   #7
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Oh and I keep forgetting to answer this- yes the allergy shots have seemed to help so far. Honestly this recurrence of ear pressure was the 1st I've had since starting the shots, and that was possibly due to me missing shots for 3 wks due to being sick and the holidays. It's when I got the shots again after missing them that this flared up. I'd still get that allergy test, plus you have sinus issues. Nothing is guaranteed but I'm thinking if the problems putting a strain on your Eustachian tubes is eliminated, the e tubes will return to normal. At least that's what I'm hoping for for me as well.

 
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Old 01-15-2013, 12:57 AM   #8
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Thanks for clarifying about the allergy shots. it has restored some hope as to that there is still something that can possibly help my current condition. I have been told numerous times that my ears should click when i swallow but I still remember how it used to feel prior to having my ear infection. the sound was more like a soft hiss rather than a CLICK! oh well, i guess since then my sinus problems are much worse than that.

Do you have sinus problems like me? or just allergies? i have mucosal thickening in my ethmoid, sphenoid and maxillary sinus and also need a turbinate reduction with septoplasty. I also agree that I may also be ready to start med school...

By the way, how quickly did the ear pressure go away after having the allergy shots?

About the overdoing the valsalva, i did come across some diving forums about possible PET from too much valsalva so I am not surprised when you mentioned this. However I am finding that I pinch and blow a lot more often now - something i need to stop myself from doing excessively now on.

Last edited by Administrator; 01-15-2013 at 06:48 AM.

 
Old 01-15-2013, 01:05 AM   #9
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Re: Adult PE tubes for Eustachian Tube Dysfunction

I forgot to mention my experience with prenisolone. I was put on it for 5 days for my sinuses back 3 months ago however it didnt change/help much with my ear problem - how are they faring for you?

 
Old 01-15-2013, 05:50 AM   #10
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Yes I was told a whole bunch of stuff about my ct scans- I have a deviated septum, some drs say thickening of the sphenoid (sp?) sinus chronic allergic rhinitis. They (ENTs) all have a different perspective. I hope that this sinus specialist that I'm seeing on the 28th will come up with a definitive answer. I hate struggling with the ear pressure and facial/ head pain. I woke up to some pretty yucky facial pain this morning but unfortunately can't take an pain relievers because I'm on the pred.

As far as pred goes, I'm not sure if it works for me. This dosage 40mg for 5 days is probably the highest I've had. I have to take it again soon so we'll see. I think it takes a couple doses to kick in maybe? I'm hoping it does something at least because work becomes difficult with all these symptoms.

Let me know how you're doing!
Jen

Last edited by moderator2; 01-15-2013 at 05:54 AM.

 
Old 01-22-2013, 11:34 AM   #11
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ohmit89 View Post
Hi all,



1. Tube insertion does not guarantee instant relief - there is a settling period of 1wk to 1 month for the stuffness to go away - but generally the tubes help once the drum heals around the tube

I have been through 2 sets of short term tubes and I currently have long term T-tubes in both eardrums. I felt instant relief when waking up from all 3 surgeries with regards to pressure (i.e, the full feeling was gone).

2. Possible changes in hearing? - noticeable changes in self perception of own voice? echoes?

After each tube insertion, I have noticed a very small decrease in my hearing. I already suffer from Autophony, so my voice is loud anyway. The most annoying side effect is an increase in tinnitus (it is louder) and a howling sound 24/7 in my ears.

3. My question is that with tube insertion - for those whose ears click when swallowing and yawning - does this go away after the tubes are inserted?

The clicking did not go away because I think it is a permanent muscular problem somewhere inside the Eustachian tube, something I just have to learn to live with!

The only benefit from the tubes is it has got rid of the full feeling/pressure. I have to live with the side effects. One of the biggest enemies of the middle ear is negative pressure, it can cause a variety of problems and is not good for the health of your middle ear.


 
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Old 01-22-2013, 01:37 PM   #12
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Thanks for replying, CobraBeer, is it possible that you have Patulous Eustachian Tube? since you had autophony in the beginning? I'm giving myself 2 more months and if the plugged feeling doesnt go away then i'm trying the pe tubes.

 
Old 01-22-2013, 02:58 PM   #13
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ohmit89 View Post
Thanks for replying, CobraBeer, is it possible that you have Patulous Eustachian Tube? since you had autophony in the beginning? I'm giving myself 2 more months and if the plugged feeling doesnt go away then i'm trying the pe tubes.
I was misdiagnosed with PET by 4 different otologists/neuro-otologists and had unnecessary surgery to close my ET orifice on both sides (done from the nose and back of the throat), as a result, I now have man made blocked ETs, hence the need for T-tubes!

Good luck in any decision you make!

Last edited by CobraBeer; 01-22-2013 at 02:58 PM.

 
Old 01-22-2013, 03:45 PM   #14
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by CobraBeer View Post
I was misdiagnosed with PET by 4 different otologists/neuro-otologists and had unnecessary surgery to close my ET orifice on both sides (done from the nose and back of the throat), as a result, I now have man made blocked ETs, hence the need for T-tubes!

Good luck in any decision you make!
I am so sorry to hear that. Did you ever find out what the cause of your Autophony is?

 
Old 01-22-2013, 04:18 PM   #15
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Re: Adult PE tubes for Eustachian Tube Dysfunction

Quote:
Originally Posted by ohmit89 View Post
I am so sorry to hear that. Did you ever find out what the cause of your Autophony is?
It's complicated! I've had every middle and inner ear tests and scans that are available, but no firm diagnosis. The last 2 neuro-otologists I visited only have possible theories and have proposed experimental treatments. Too much of a gamble and I don't want to be a guinea pig for them to experiment on!

There are numerous things that can cause autophony. Most so called specialists have not even heard of it (that is changing slowly but surely). If you suffer from autophony and would like a list of possible causes, I will be happy to share with you and the board?

Regards

Last edited by CobraBeer; 01-22-2013 at 04:20 PM.

 
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