#8

I’ve had Eustachian tube dysfunction my whole life, although I only learned this about 20 years ago. I had major cholesteotoma issues that destroyed my hammer, anvil and stirrup in both ears. This was due to ETD, apparently. Luckily, I had reconstructive surgery but my right ear surgery was less than successful, let’s say.
Anyway, I’ve been pestering my various ENTs over the years about what can be done for my obvious ETD. Especially in allergy season. The response has been the same: there’s almost nothing to be done. The balloon tubes they’ve been playing with have not had good results. I’ve had atrial fibrillation in the past, so Sudafed is out. My best answer by far has been getting a Bone Assisted Hearing Aid. this device bypasses the whole middle ear and amplifies the cochlear nerve through the mastoid bond. No ETD in the mastoid bone!
Other than that, I’ve not heard of an effective treatment.

#9

Well wow gents! I am kind of nonplussed at the lack of options for what “seems” to be a physical issue relatively easy to fix?! That’s like saying, well, you were born with lenses on your eyes that make you far- or short-sighted, so you’d best just squint and bear it!

Hum. Not very satisfying. :face_with_diagonal_mouth:

#10

there’s no cure for the cold yet either. Or dementia or altzhiemers. Or Lyme’s disease. As the song says, there ain’[t no cure for love. or death for that matter.
whatcha gonna do?

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#11

I think he was most likely saying that the NHS did not have any treatment options for it. I now know that the balloon dilation became available later in 2019. What annoys me looking back, is that he did not ask me how much of an issue my hearing was and did not suggest a hearing test.

#12

Yes, that’s right, but what I was talking to him about was Eustachian tube dysfunction that I had had for decades. No infection, no fluid, just problems with pressure equalisation especially in windy weather (sometimes also hearing my own voice booming in my ears).

#13

I had the same issue of ETD, since many years, after repeated consultation I went to another doc, where he suggested me to avoid certain foods and it worked somehow but not fully, but happy

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#14

I have actually read the opposite - 97% success rate. My otologist felt it would ameliorate the fullness/pressure issue, but didn’t think it would address any hearing - which is odd, because ballon dilation is touted as relieving the “symptoms” of ETD, one of which is always listed as muffled hearing or hearing loss. I might have had it done already if not for the fact that my insurance won’t cover it until a year after the issue manifests - which will be November/23.

#15

which foods did he recommend you avoid, please?

2 Likes
#16

YOU SANG IT, BRO’! :rofl:

#17

Okaaaaaaayy… With that kinda logic, what else will insurance companies deny coverage for until a year has passed: heart attack, stroke, cancer, bowel obstruction …

Or perhaps most people have just fleeting ETD issues? All I know is I’ve had mine since birth and I’m 68 now, so I’d hope an insurance company would be a little more flexible with that restriction. :face_with_raised_eyebrow:

#18

I hope you’re right about the success rate! I’m still uncerftain if the balloons stay in the ETs to hold them open, or if they blow them up and are removed. If the latter, I would imagine my tubes might just collapse again, as the do after the pressurizing maneuver whose name I forget. For me, the hearing issue is paramount. I hope you get the procedure done soon and report back!!

#19

they insert, inflate., wait 2 minutes and remove.

#20

I think ETD can include both a blocked eustachian tube (the most typical problem) and a tube stuck open, or patulous euctachian tube.

After a COVID infection, I did a nasal rinse usian a bottle from NeilMed, and squirted water into both ears through my nose. This resulted in me being able to hear my own voice too loud, and my heartbeat, but external sounds were greatly diminished, even with HAs. I saw my ENT, tympanometry was done, and he diagnosed patulous eustachian tube. He had no advice other than to wait. It lasted for months and gradually got better. Eventually tympanometry and hearing was back to my previous levels.

#21

Thanks for this. I’ve actually read that using NeilMed is one of the treatments for each type of ETD. nasal sprays and antihistamines are usually reserved for blocked ETs only.

Were you advised, or did you elect, to stop neilmed after this? I use NeilMed daily and have never been told it can cause problems.

I know sometimes if I do valsalava or toynbee maneuver, I get a lot more of the high frequencies of my hearing, but a generally diminished volume of hearing. Sometimes it just brings back much clarity, relieves a dulled hearing sense, and returns a sense of normalcy, and perhaps I drift between both patulous and blocked. wondering how that would be treated…

Did your Patulous ETD have OBVIOUS effects - like “no question my voice is way too” loud kinda thing? I ask because hearing aids can also cause your own voice to be loud too, and I’m trying to distinguish for myself.

How many months did it take to recover? any fullness feeling or is that all gone too?

your story is calming - thank you

#22

I didn’t think it was possible to reach the eustachian tubes with water from a Neilmed. I also use one daily, sometimes twice daily in allergy season. My ENT thinks they’re great. I do too. they help as an allergen rinse for sure.

#23

I’m amazed daily at the contradictory information that is out there. Of course we as patients get conflicting info, but even specialists and ENTs say opposite things much of the time. it’s a tough road to navigate and know what should or shouldn’t be done with remedies and treatments outside of the ENT office.

#24

user172 -

My mistake was in forcing the rinse when my sinuses were completely blocked. That’s what forced the water through the eustachian tubes. Totally blocked sinuses are rare, and I was desperate. I have poor immune function due to chronic lymphocytic leukemia. COVID itseld lasted at least 21 days, and I got a secondary bacterial infection.

I still use the rinse.

At first, no amount of effort restored normal function - yawning, swallowing, Toynbee, Valsalva did not work.

The constant heartbeat made it hard to sleep, and it was really hard to hear people around me, even with HAs turned up max. A few months later, it would spontaneously close, based on returned mid and high hearing, reduced volume of my own voice, and lack of heartbeat.

The audiologist documented the additional hearing loss, and recommended against adjusting the HAs. I saw the ENT monthly for 3 months. The 3rd month was better - intermittent heartbeat, own voice, poor hearing in mid to high. After 6 months it was gone.

This was an extreme case. As I said, my immune function is poor, and I misused the nasal rinse. I want to emphasize that if you cannot breath through your nose, do not force water up your nostrils in an attempt to open it.

I find that both doctors (primary care, especially) and patiens can confuse ETD as a generic term with Patulous Eustachian Tube. A blocked eustachian tube is much more common than a tube stuck open, I think. I did some research on Patulous Eustachian Tube (PET) that others might find useful:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947718/

Revisiting the Diagnostic Performance of the Modified Nine-Step Test for Obstructive and Patulous Eustachian Tube Dysfunction

Diagnostics (Basel). 2022 Mar; 12(3): 732.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7590401/

Management of Patulous Eustachian Tube

JMA J. 2020 Apr 15; 3(2): 101–108.

#25

thanks for this - i wish that first one wasn’t just the abstract. interested to know the 9 steps.

did the hearing return as well? Glad you found relief even though it took 6 months. That’s a scary period.

I don’t hear the heartbeat or voice, so my guess is its not patulous for me, and my ET might be too closed, or perhaps it’s more related to ear drum shape and not ETs at all.

#26

The hearing did return to my previous mild to moderate hearing loss.

I’m not an ENT or an audiologist. If I didn’t also have the chronic lymphcytic leukemia going on, I would have pursued an ENT at an academic medical center. I suspected, though, that there was not much that could be done, and I felt guilty that I brought it on myself. I am accustomed to things taking longer to heal at my age (late 60s) and infections taking longer to clear due to the leukemia.

Don’t give up!

#27

thank you!! I fear it may be a waiting game for me too. and that’s fine with me.