48 year old ETD sufferer. My story so far.

Hello,

This is my ongoing story with ETD based hearing loss. This is for any fellow sufferers out there and for any curious ENT doctors/Surgeons/Radiologists out there.

Patient background:

All references are regarding the right sided ear.

• Male 48 years old from United Kingdom with unilateral ETD with conductive hearing loss.
• Chronic ear infections as a child. Symptoms of Acute otitis media, Otitis media with effusion.
• Diagnosed with ETD as a child.
• 4 tube (grommet) placements in right ear between the ages of 7 to 17.
• Chronic otitis media with effusion as an Adult. Very few ear infections over the last 30+ years.
• TMJ pain/disorder from the age of 18 to present day. (Possibly due to dental trauma, 4 wisdom teeth removed in one session)
• PET symptoms started around age 22 to present day. Autophony, sensation of breathing through the ear drum. Symptoms usually only appear during exercise and excessive talking.
• Main symptoms throughout: Blocked/stuffiness/Fullness/plugged ear sensation. Like being under water. Hearing Loss. No ear pain or tinnitus.

Over the years I saw lots of ENT doctors/Consultants who said there was nothing that could be done to restore my hearing or relieve the symptoms. The last one I saw in 2002 said the ear drum was rigid and immobile due to scarring from multiple tubes being inserted.

I can occasionally open up the Eustachian tube in the right ear if I perform the Valsalva technique with lots of pressure. I can get the ear to pop but I still have ear fullness like being under water.

Eventually I gave up trying to find ENT doctors who could help me alleviate the symptoms of ear fullness or restore some of the hearing in my right ear. So I just lived with the ear fullness and deafness for the next 20 years.

Fast forward to late 2022.

I found an Ent doctor who had performed an Adenoid/tonsillectomy on my daughter. Impressed with the results of that I made an appointment to see if I could get any of my ear symptoms relived and some of my hearing restored. The doctor was sure there was fluid behind the ear drum and that removing it would restore my hearing. He suggested that a T-Tube and balloon dilation would help.

I had a hearing test which showed conductive hearing loss of about 40db around the 1k frequency range (see pictures).

He also recommended a CT scan of the ears.

The CT scan report came back saying I had Chronic Otomastoiditus and showed opacification of the Mastoid bone and middle ear space. (See pictures)

I think I can see thickening of the of the right ear drum. But I'm not 100% sure. Maybe any curious radiologists out there can correct me. The right middle ear space is opacified so I find it difficult to see any obvious changes to the ossicular chain.

The ENT doctor thought it was chronic inflammation due to Eustachian tube dysfunction and suggested inserting a T-Tube and performing a balloon dilation, I opted out of the balloon dilation due to my occasional patulous eustachian tube (Really the ENT doctor should have flagged this up before recommending it!).

He also recommended turbinate reduction surgery as both turbinates they were enlarged and hypertrophied.

This was all done under general anaesthetic a week or so later. When I woke up in recovery I could tell that the problem wasn’t fixed and in fact my hearing in my right ear was now worse due to the T-Tube. It was immediately apparent that my hearing loss wasn’t due to the fluid in the ear.

I was told that it would take a while for the middle ear inflammation to go away (6months to a year!) He also said that my right ear drum was sclerotic and rigid and my hearing would never be the same as my left ear. He said the ossicular chain (stapes,incus,malleaus) was fine and not damaged.

I’m not sure this can be true though as normally Myringosclerosis (ear drum sclerosis) doesn’t effect hearing. Whereas Tympanosclerosis effects the ear drum and ossiclular chain.

Also, the ear fullness is still there even with a T-Tube inserted, the middle ear pressure should now be equalised with the pressure outside of the ear canal. I wonder whether my TMJ disorder is putting pressure on the eustachian tube? I wear a night guard(splint) to correct my bite but I still wake up with a clenched jaw, so might try one of those anti-snoring tongue devices to try and relax the jaw whilst sleeping.

As for the deafness I think I’m going to have to head down the hearing aid route. Getting a Tympanoplasty procedure would be too risky at this stage with moderate hearing loss. Also, trying to find a good surgeon where I live could be difficult.

I understand why my ENT doctor suggested a T-tube to drain the fluid and get air into the middle ear. But I think he was wrong to suggest that I could get my hearing back once we drained the fluid from the ear. A careful look at my past history of multiple ear infections and tubes could have indicated some form sclerosis was present. Doctors in general need to careful about jumping to solutions that give false hope!

So now three weeks after the operation and with worse hearing than before I’m feeling rather down about it all. I’m trying not to let it consume my life, but that is difficult at present.

So, my plan at the moment is as follows:

1. Continue with the TMJ exercises and night guard
2. Order an Otovent to use daily to see if I can open up or retrain my eustachian tube.
3. Try some anti-histamine medicine to see if it’s allergies that are causing my ET to get inflamed. (Not sure this will work as my left ET is fine and works perfectly) I do have a stuffy nose most of the time. Even after having the turbinate reduction operation.
4. I will give the middle ear some time to aerate and for the inflammation to hopefully subside.
5. Enquire about getting a hearing aid.

If after 1 year of no improvement in getting my ET to open, and I have no PET symptoms then I may consider getting the balloon dilation procedure done.

I will try and post updates as time goes by.

Luckily my symptoms are not as bad as a lot of the members of this forum, some of whom suffer from seriously debilitating conditions. My heart goes out to all the people suffering with their hearing and with their health.

Thank you for reading. Comments and suggestions are welcome.

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