ET procedure helped my tinnitus

[hrl21]

Just wanted to share with the community my experience which suggests that in some people Eustachian Tube Dysfunction may play a role in tinnitus. I’ve had tinnitus for the last 12 years. It’s never gone away but some days are much worse than others. About 5 years ago I also developed an ET problem in one ear, only triggered when I flew. That ear was never able to “pop” during a flight, resulting in weeks/months of really loud tinnitus and hearing loss. Also hyperacusis and sound distortion; music would sound awful. I finally opted for ear surgery this September, a balloon dilation of the ET. My Dr. said the procedure would probably not improve my tinnitus and joked that I’d have to pay him more if it did. However, within a week after surgery I noticed my tinnitus was at least 60% better and it still is! Also my hearing has come back! I’ve taken 4 flights without any lasting repercussions, so it worked for that also. I’m 4 months out now and am just enjoying the relief. Fingers crossed, I hope it’s long term!

[ChooseYourUsername]

Thanks for sharing your experience.

Where are you based? I could be wrong but I don't think this procedure is generally available on the NHS.

[hrl21 in reply to ChooseYourUsername]

I’m in the US. I apologize, I didn’t realize this procedure may not be available in Britain.

[emily62]

I have Eustation tube disfunction and had this operation last February on the NHS in the UK Sadly it didn't work for me just gave me balance problems that I still on occasion suffer from

Emily

[ChooseYourUsername in reply to emily62]

I am sorry to read the procedure was not sucessful for you.

Was this procedure performed as part of a research project?

[emily62 in reply to ChooseYourUsername]

No it was performed by the surgeon who was the pioneer of the procedure

Mr James Tysome ..

[emily62 in reply to ChooseYourUsername]

Thank you for your kind words.

I think if you have an idea or know why you have developed eustation tube disfunction it's probably easier to treat.

In my case I have just been diagnosed with an auto immune disease i suspect I've had this for some time and it is the inflammatory process and nerve damage that's caused the tinnitus

Emily

[ChooseYourUsername in reply to emily62]

Thank you , yes I think you are right also ETD seems to cover a variety of anatomical problems as a diagnosis

[hrl21 in reply to emily62]

Emily,

I’m so sorry this procedure didn’t help and left you with balance problems. Does your Dr. have any suggestions? When I began having problems flying I would get bad vertigo soon after flying. I found that taking Sudafed before and after prevented the vertigo. I know your balance problems are probably not related to flying but you might ask your Dr. about Sudafed. Again, I’m sorry you went through this without a good result.

[emily62 in reply to hrl21]

Thank you for your kindness.

I will talk to my Doctor regarding sudafed the vertigo and balance problems are a lot better then when it first started.

My Doctor said it should improve with time and that the brain compansats corrects ear balance problems and that it may take a long time

Emily

[Poppycat1234]

Hi Turtleover, i'm glad you're getting relief and long may it continue.

I'm curious about a couple of things if you don't mind me asking. What frequency was/is your tinnitus and how would you describe it?

As far as the ETD before the surgery, did you have a problem popping the problem ear at any time other than flying or was that only a problem during flying?

I've been told i have mild ETD but I don't typically have a problem popping my ears but get a lot of crackling when swallowing/yawning etc so not sure if this procedure would help me but I guess I should enquire.

All the best.

[hrl21 in reply to Poppycat1234]

Hi Poppycat,

My tinnitus is usually a steady insect type hum. Not sure what frequency. It often got worse due to noise, flying or stress. Often after flying it would sound like a roaring wind storm for weeks.

Since surgery my ear still has a problem with pressure on ascent and worse on descent when flying and I have to still repeatedly try to pop it. The difference is now I can get it to pop and it’s fine after landing.

I too often get crackling when swallowing/yawning but I’m used to it. Popping my ear was only a problem when flying and then afterwards.

If you can fly without a major problem you may not need this procedure. I was diagnosed with Baro Trauma ear.

Hope that’s helpful.

[Poppycat1234 in reply to hrl21]

Thanks for the reply and info, much appreciated.

I don't think I'd benefit from this procedure given i can pop my ears unless I have a cold. The crackling is a weird thing, I can go days without noticing it although it's always there, but then I can become aware of it and then it becomes annoying. I guess this is habitation of just another reoccurring bodily sound. If only I could apply that to my tinnitus more often!

All the best.

[Michael8272]

Hi, thanks for sharing this, do you still have hyperacusis? What made the doctors give you this treatment because I think my whole problem is the same as yours,

Thanks Michael

[hrl21 in reply to Michael8272]

Yes my hyperacusis is much better. I still have earplugs in my bag at all times just in case and am convinced my ears could still damaged by loud noises. It’s hard to change old fears. But all in all the world sounds pretty normal now. I’ll always have tinnitus but it is now at a mild level I can live with. Two doctors I saw said the only answer was tubes - which I did once. A third became convinced I was a candidate for this procedure when he agreed I couldn’t clear my ear and saw by my scan that everything was in the right place for this surgery to be safe. I forget what needed to be where but can easily look it up if you’d like.

[Michael8272 in reply to hrl21]

Was your hyperacusis already better before you had this procedure? Did tubes make any difference when you got them done?

[hrl21 in reply to Michael8272]

Hi Mike,

My hyperacusis was the same since early summer, but not as bad as last winter. Intensity would come and go over last few years. The tube last April made no difference with damage already done re tinnitus and hearing loss but did made my next flight (day after) a breeze ET wise with very little pressure build up. Unfortunately the tube gave me such sound distortion I had it removed soon after. For a lot of people with ET dysfunction, tubes work really well. I think they can prevent future damage but they didn’t improve my existing hearing/tinnitus problems. However, if I hadn’t been offered this procedure I probably would have tried a tube again in my bad ear.

[Michael8272]

The reason why ask you about hyperacusis is I had gotten rid of my hyperacusis and now it has come back.i went to gp and she said I have a bit of fluid behind eardrum, she gave me ear drops but it hasn't helped at all.i had a bad cold 5 weeks aga and hyperacusis seems to have come back with this.

[hrl21 in reply to Michael8272]

Hopefully your hyperacusis improves as the fluid dries up. It’s so difficult when you think you’re finally done with something and it returns. I know same thing could happen to me. My hyperacusis slowly developed after each bad flight experience.

[Michael8272 in reply to hrl21]

Thanks for your post.

Thanks Michael

[ChooseYourUsername]

NICE seem to currently updating their advice on the procedure

However in 2011 they published the following - this is an extract and not all of it -

1 Guidance

1.1 Current evidence on the efficacy and safety of balloon dilatation of the

Eustachian tube is inadequate in quantity and quality. Therefore, this procedure

should only be used in the context of research, which should address the efficacy of the procedure in the short and longer term, and also document safety outcomes. Research studies should clearly describe which parts of the Eustachian tube are being treated and report subjective measurements of symptom improvement and objective measurements of Eustachian tube

function.

nice.org.uk/guidance/ipg409