Eustachian tube dysfunction

[gilders]

I know many of us suffer with.
I was wondering if anyone has had any kind of operation to correct it.
I've tried all the usual remedies, but have only heard of one minor operation that isn't widely available -
"A treatment recently developed is called balloon dilatation. This involves inserting a tiny tube with a small balloon on the end into the Eustachian tube through the nose. The balloon is filled with salt water and left in place for a few minutes in order to stretch the Eustachian tube. Currently the treatment is only being used as part of research, but may be authorised for general use if trials are favourable."

So has anyone had the "balloon" treatment or anything else?

As previously mentioned, I love to travel, but the pain and deafness after flying can last for a week, sometimes effecting the whole of my holiday:sad:

[gilders]

I can't help but think that once the "balloon" is removed, the eustachian tube would close back up soon after.

[Dirty Don]

This isn't terribly pertinent, but I have the opposite E tube problem after WG dx/attack. Mine is stuck open, ENT went in and tried to put 'stuff' in there to close it down a bit...didn't work well at all. At this time, it appears E tube work is partial and temporary for the most part. Still experimenting on our heads I guess!

[Pete]

In my mind, the eustacian tube acts as a two-way pressure relief valve, opening momentarily to allow the pressure difference between the middle ear and external environment to equalize. That happens momentarily many times each day. Fixing the valve so it remains either always open or always closed defeats the purpose. Mine is mostly closed, but I can force it to open by blowing my nose hard. I don't like it when it sticks open though.

[marta]

Hiya all,

I come on here when I have a spare minute and then see all these threads that I really really want to reply to.... I avoid it in order to have enough time to do the other stuff I HAVE to do, but I feel compelled to answer this one because I feel like quite the expert in this particular scene...

ETD - is what they call it when you don't have WG, but with us it's the symptoms for ETD but for a different reason. After the initial yuckiness with my ENT, we've become pretty close and have some interesting conversations about all stuff sinus/ear and Weggie. He likened our Eustachian tubes to the canary in the mine. The normal opening is no more than a couple of mm's, and when there is any inflammation, which is our big symptom that causes all the problems, the Eustachian Tubes (ET) are the first to show it, and because of their function, we feel it pretty significantly. Mine were plugged for a long time, a very very long time 2 years plus and it was my very first symptom too.

Right now they've been plugged for about 3 months but it's not as bad as it was originally. The remedy for the issues you are having Gilders is a tube implant in your eardrums. It allows for any fluid buildup to come out - thus improving hearing impairment caused by the fluid, and also keeps the pressure inside the ear and outside permanently aligned. The problem is that you can't go swimming or submerge your head under water without earplugs, or you get a rush of water into your inner ear chambers. It is also good to prevent infection that can develop if you've got too much fluid buildup from a permanently closed ET. The tubes last about 6-8 months and then come out on their own. I've had them in my ears 3 times since diagnosis. They do alter your hearing in a different way that the blockage alters it - with them sometimes sounds are too loud, but it's better than too quiet. It's a very simple procedure, no more than 10 minutes at the ENT doc's office. But it sure helps with flying, you will never experience any pain with those puppies in there.

It's a good solution for what your issues are and it's not permanent so when you get a better functioning ET's then you're not committed for life. The balloon procedure sounds like it's a bit too much risk for the benefit and like Pete said, I think it's counterproductive considering that our disease is inflammation based and anytime you get a flare or a little activity it will all be for naught. It's like the MS treatment that balloons the neck arteries but is not working because MS is an autoimmune disease and it's inflammation based, so they're only treating it for right here and right now, and not taking the disease process into consideration.

Just my opinion, but I trust it with my life. Ha ha.

Marta

[pberggren1]

What does your ENT think gilders? I would research the balloon thing a bit more. Sounds interesting. If your ENT thinks he can do it I would go for it. Grommets in the ear drums is a good idea too if your eustachian tube is not permanently closed. It can be hard to tell sometimes if the tubs are damaged or not. The grommets don't do too much damage to the ear drums so don't worry about too much hearing loss that way. They can give you an idea if the tubes are working or not. Very little risk with the tubes and easily done. Sounds like the balloon thing is easy to do as well.

[sectech1]

Hi there, new to this site. My right ear was stopped up for a couple months, then I had autophoney in that ear, I think its called that, when you hear yourself breathing, and your voice is so loud in your head you can't hear it coming out of your mouth. Drove me crazy!! It started to go away a little when I got sick and was diagnosed with Wegeners. My ear still stays stopped up, some days better than others, but don't have the autophoney thank god!

[gilders]

I've had the tubes in the ears (grommits) twice. Unfortunately they only lasted a couple of weeks before they got blocked. I never flew whilst I had the grommits in, but did notice a big improvement in hearing and the stuffiness feeling, plus the sound of your voice and breathing that sectech1 mentions.
Due to the short period of relief where the grommits worked ENT said that the risks (anesthesia) outweighed the benefit (kidney and heart issues make it inadvisable for me).
The grommits themselves stayed in my ears from a few weeks to one that was there for about 2 years. But. like I mentioned, they became blocked within weeks:mad1:

[pberggren1]

Do you have your hearing checked regularly Gilders? Have you ever had an auditory brainstem response test done?

[gilders]

Do you have your hearing checked regularly Gilders? Have you ever had an auditory brainstem response test done?
Hi Phil.
From the age of 17 when I was first diagnosed with WG I saw ENT fairly frequently for about 10 years. Apart from the failed grommits, I really had no help from them. They eventually discharged me saying that the nothing could be done to help. Before each appointment I had an hearing test, not sure if it was the "auditory brainstem response test" you mentioned. It was a test to see which frequencies I couldn't hear very well. The lady conducting one of these tests mentioned that an hearing aid could help. I mentioned this to the ENT specialist, but he dismissed it.

At the beginning of this year I was having a lot of trouble with my my ears (ties in with the now confirmed WG relapse) so got my GP to refer me to ENT again. This specialist was useless, had one quick look in my ear and said it looks clear - nothing we can do and rushed me out. As I was leaving I mentioned that my tinnitus was worse than usual. He then made an appointment for me to see a tinnitus "person". Fortunately this tinnitus nurse seemed to be far more knowledgeable than any of the ENT specialists that I've seen. She also thought a hearing aid would benefit me and arranged a fitting. I got the hearing aid a couple of months ago and it has helped both my hearing and tinnitus.
She couldn't believe that I've had to wait 19 years for the hearing aid.

Since I received the hearing aid, my specialist who deals with my WG has had me seeing a different ENT specialist. This guy did a thorough examination, including the biopsy which led to confirmation of my current WG flare/relapse. I presume that I will be having my hearing checked frequently now to make sure that my digital aid is set to the correct frequencies.

[pberggren1]

I'm so glad you got the hearing aid. You just have it for one ear? My loss was due to nerve damage from the macrophages.

[gilders]

I'm so glad you got the hearing aid. You just have it for one ear? My loss was due to nerve damage from the macrophages.

Yes just my left ear. My right ear's hearing is actually excellent. The tinnitus nurse explained that the tinnitus is in my left ear because my brain struggles to understand how it can hear from one ear and not the other. To compensate for this my brain creates it'sown noise for my left ear (tinnitus). That's why the hearing aid has helped with the tinnitus - it doesn't need to make it's own "fake" noise as much now:thumbup:

What are macrophages?

[pberggren1]

Macrophages are the immune systems giant killer cells.

[vdub]

I'm with Don. My right eus. tube seems to be constantly open and my inner ear drum contains fluid each morning, but drains out after a couple hours.