EustachianTube Dysfunction: Balloon Dilation

[Randy1957]

First post, I looked around and didn't see anything on this topic. My ENT put a tube in my left ear to relieve the otitis media, which it did. They tend to fall out after a year or so, so I'm expecting I am on the end of this particular tubes lifespan (1 yr and 3 months) my other ear has begun acting up more frequently, but is not as bad the left one was.

Rather than get tubes in both, I was wondering if anyone here has had any experience with Eustachian tube therapy via balloon dilation? Or is is it contraindicated for Wegener's patients? Here is an RCT on its use and efficacy compared to medical treatment. Would be great to avoid holes and tubes in the ears if possibl.

https://journals.lww.com/otology-neurotology/Fulltext/2018/08000/A_Randomized_Controlled_Trial_of_Balloon_Dilation. 19.aspx

[Dirty Don]

Welcome to the best experiential info on earth for GPA. So, I had E tube therapy on right ear. Mine is the reverse of yours, stuck open...due to first flare attack on sinuses and lungs. It didn't work very well. Am stuck with ear issues, but not threatening or debilitating, mostly irritating. Nothing was contraindicated for us in the operation, pretty safe. Best to you, hope the journey goes well.

[Randy1957]

thanks for the feedback DD

[me2]

I have had a dodgy ear for over a year and just recently had a tube placed in it. I can HEAR again in that ear. It is such a wonderful thing. I was told that the tube might last a year and "If it turns out to be something that you like having there is a more permanent type of tube I can put in."

I had never heard of this more permanent tube idea. The current tube means I can hear again and could fly on an airplane if I want to. With the plugged eustachian I was very scared of flying. I flew once with a plugged tube (I didn't realize it until the plane lifted off) and it was super painful . The plane had one stop to make and the stewardess suggested I get off of the plane, take a bunch pseudoephedrine and resume with a later flight. I did this and it worked a charm.

My recent problems did not respond to sudafed therapy. I have not heard of dilation therapy. I have had tracheal dilation several times I can report that it works VERY well for airways- if you ever need that type of help. That was several years ago and wg has decided to leave my airway alone- for now.

[Randy1957]

Thanks for the input. me2. My ENT told me my tube would last about a year and I have gotten that and a little more out of it. Like you, my hearing returned in the tubed ear albeit with some tinnitus. The other ear is now getting dodgy as you put it, so looking at other options, but it may be a tube for that one too.

[me2]

That's great you have gotten some good mileage out of your tube Randy. I also have tinnitus. I've looked for and tried some solutions for that but it appears there are not great options- yet. I told my hearing doc that I see solutions for tinnitus advertised all the time. He said he knew of nothing that really worked and thats why there were so many 'solutions' out there. The 'solutions' are people taking advantage of people's desperation and the fact that nothing does work.
I'm sure it's possible that some people are helped by some of the 'solutions' but the number appears to be extremely small at best.
An idea in the same vein was something my PCP told me one time. He said that if a medical problem had several different solutions it meant that it was likely none of the solutions were all that great. A great solution would become the main option and the other solutions would not be around.

[drz]

I find my tinnitus seems to come and go for unknown reasons. Some times it becomes so loud it will wake me up at night when sleeping. Other times it is seems very faint or non existent. I see a lot of ENT doctors and to date all agree there is not much to fix the issue. I did find getting a BAHA really helped me years ago when I was a lot more hearing impaired. My doctors then explained to me that tinnitus was an attempt of the brain to generate some noise since I was not receiving any sound in that ear due to deafness caused by the GPA. With the BAHA I could start processing other sounds again and the tinnitus seemed to go away for awhile.

[Randy1957]

drz - to a great degree tinnitus is a nervous system issue, I agree. I had none in the tubed ear prior to getting the tube, although my hearing is better in that ear now than in the untubed ear, tinnitus notwithstanding. When I am occupied I can ignore it. my guess is, the fluid buildup and intense "bone conduction" was masking the squeal, and when drained the tinnitus could be heard. I dunno. neither do the docs.

[larrysb]

I had balloon dilation Nov 1 2019, with tymp tube, mostly because the ENT wanted for me to have instant gratification and assure the fluid remains drained and hearing restored while waiting for the eustachian tube lumen to be functional, which can take a few weeks.

My eustachian tubes, both sides, have been "dysfunctional" since I was a kid. I used the battery powered equalizer device for a few months with no affect on the (right) GPA- damaged side and reasonable improvement on the other. The procedure completely fixed the right---hearing restored, pain/pressure gone, but I wont know if the dilation was successful until the tube falls out.

Only "problem" was my insurance did not cover the balloon procedure. 4K USD out of pocket. The insurance company claims it is an investigational procedure and wont pay.

Having chronic "seasonal allergies" and recurring sinus pressure/musous issues is always an issue: is it a flare or not? This time, I'm going with not, considering my blood tests are "not indicative" and I'm 6 months post RTX infusion.

Subglot stenosis surgery Monday. UCLA Medical. Can't wait to breath normally again. It's affecting my volleyball game:biggrin1:

[me2]

Larrysb- I have had stenosis procedure three separate times and it really worked wonders for me. This was many years ago. I guess my airway decided I'd been through enough for a while.
You will be back dominating the volley ball court in no time.

[Randy1957]

larrysb
good info. my new ent thinks he can get the procedure covered but the balloon may be out of pocket for me. He suspects the problems in my right ear may be due to patulous (always open) et. not much to be done for it. tymp tube might help, might not or might make it worse. no fluid on that side. we will do a little extra testing on it in a couple of weeks. he thinks the dilation for the left might be a good fix.

[smileyurbs]

I have problems with my Eustachian tube being closed as well and have had 5 tubes put in, in 2 1/2 years. Mine usually last 6 months even thought they should last longer. My ENT as well has recommended getting the Balloon Dialation as well, which I plan on getting done. I have an appointment with my ENT next week and plan on getting things started to have it done.

Sandy

[Randy1957]

Just bumping this thread with an update. My consult last year made it clear to me that a dilation a) might make things better, or b) worse or c) do nothing at all. So, I went ahead and put up with the spontaneous popping and clogging for another year. When I visited my regular ENT a couple of weeks ago, his audiologist confirmed (she worked with me on measuring while I recreated the condition then cleared it) a patchoulis tube. We did a temporary myringotomy to see if things got better before committing to a tube. It did improve, so a week later we put a tube in that ear. I had gotten two years and change out of the tube in the other ear. It had, conveniently, just worked itself out, so we replaced it at the same time. Interestingly, my ENT said the eustachian tube dysfunction in the newly tubed ear could be from the Wegener's or it could just as well be a delayed effect from when I was a much larger, heavier human being.