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ETD : Don't let the Doctors fobb you off.

Posted , 12 users are following.

jon82247
jon82247

 I just want to share my experience here in the hope it might help others, as I keep reading how people are suffering from ETD for years, and I could have suffered too if I'd not been so persistent.

I'm a professional musician so my ears are my life. For 10 years, on and off I would get short lived fullness in my ears, a dual pitch between ears, and a weird buzzing, but in a few hours it would stop.

In August it came back and stayed, for 12 weeks. Constant full pressure in my ears, a fluttering and deep loud humming in my right ear, like a car engine outside the window.

My GP gave me an antibiotic spray for an ear infection.

Didn't work.

Thankfully I'm insured with BUPA so had fast access to ENT consultants, however :

ENT number 1 said I had a fungal infection in my ears and prescribed Canesten ear drops.

2 weeks later I visited him again as there was no change, he said, oh it'll go in time.

2 weeks later and 4 weeks not being able to work, I saw ENT no2

He shrugged his shoulders and organised an ear test which I passed fine, and with that in mind he said I just have to live with it ,and gave me some Valium for the fluttering in the right ear.

2 weeks later, and 6 weeks of no work I saw ENT no 3.

He shrugged his shoulders and said it's tinnitus from years of working with music, and that the right ear problems are obviously nothing to do with the left ear problems, and he signed me up for some kind of NHS tinnitus support group, and an MRI scan just in case..

Now desperate, and convinced I had ruined my ears, and wondering what I'll do for a career, I managed to see a foreign ENT professor while on an overseas trip, who took one look up my nose (the first to bother doing so) and told me that was the problem, and to go home and get another ENT to organise a CT scan, and use a fibre optic camera up the nose, and for me to buy and use an "electronic ear popper".

I did this with ENT number 5, the CT scan came back showing I have mis-shaped cartilage in the nose which is stopping mucus from draining in the normal way, thus finally also finding the cause for my late night choking due to post nasal drip. This mucus had also found its way into my Eustachian tubes.

ENT no5 prescribed me a new nasal spray called Dymista, and within a few days of using this and the ear popper I was completely symptomless, and still am 4-5 months later. I have an operation planned to fix the nose problem, and hopefully that will be it.

If I had listened to any of the first 3 allegedly highly thought of ENT Consultants, then my career would have been over, and I would have spent God knows how long with the loud buzzing in my ears, maybe forever.

If you have these symptoms then I really can't advise you enough to get your ENT doctor to:

organise a CT scan.

Check the nasal passage.

Try Dymista,

Try the electronic Ear Popper.

Don't accept Tinnitus as a half arsed diagnoses !

best of luck, I feel for anybody suffering with this horrible condition.

 

6 likes, 9 replies

9 Replies

  • sharris4eva
    sharris4eva jon82247

    Posted

    Thank you fro sharing this. I have got my first consoltation with ENT this week and wanted to ind out what I should be asking for - TEST wise, so thank you. I will be asking for all of the things you've listed. 

    I strangly have suffered for years with Tinnitus but honestly think its definately related to my nasal passage. Always got a runny nose and constantly having to blow it. 

    Thank you for telling your story. 

    I'm keeping my fingers crossed for a solution to my problem. 

    Thank you,

    Sarah 

  • kim74340
    kim74340 jon82247

    Posted

    hello jon82247,

    your post compels me to reply,and i hope you may be able to point me in the right direction.for a year i have suffered with almost identical ear problems as yourself.at least 3 unhelpful ents and no better.i am also a professional musician,and now pretty desperate with this.a brief chronology as follows:11/13 sore throat,12/13 blocked right ear,thought i was going deaf like beethoven,1/14 low humming right ear and sound sensitivity,ear fullness,temporary unblocking/blocked feeling,dual pitch perceived(like peoples voices are daleks,a tone heard below main voice,like in 5ths},high pitch sounds appear and mid pitch then arrive.1/14 until now 1/15 this is what i ve been told....tinnitus,hyperacusis,diplacusis,etd,post nasal drip-these are the names of my symptoms,then several bizarre diagnoses of cochlear hydrops(menieres),i don t have this,otosclerosis,i don t have this,patulous eustachian tube,i don t have this either)

    6/14 i developed the post nasal drip and at that time my ets started popping,crunching,slapping, you name it,a further intrusive noise with every swallow to add to the rest.the conclusion from theses ents"it should settle down".so,who can you recommend?are you allowed to mention this on the internet? i m sure it is sinus related,and similarly mucous dripping onto et openings or even inflammation of et lumen.done all sprays,antihistamines and steroids to no avail.i ve said enough,but would be very grateful if you would be able to reply as this is a very awful condition,especially for a musician.i must add that even more wierdly,a relative in my family had the same sore throat and developed all these symptoms too! and none of the nhs professionals wish to consider this.

  • dan0909
    dan0909 jon82247

    Posted

    I think I left a reply on our similarities earlier. I also had ct scans and other examinations. I was kind of excited about getting my " ear popper" , but it didn't help at all. I still get more satisfaction my simply plugging my nose and blowing into it, which pops my ears. How long did you uses the ear popper until you saw any results?

     

  • mike40892
    mike40892 jon82247

    Posted

    Thanks for  this it was a great help. I am also with BUPA and have now arranged through my GP the referral for the tests.
  • bayman03224
    bayman03224 jon82247

    Posted

    Hello jon82247;

                               I have just read your post, and as I am in a very similar situation, I wanted to see how you are getting on with your condition now ?

    I too am a professional musician, and music is my life. I have had a throat reflux condition for almost a year now. Had the camera down the throat with nothing that they could see. No-one can telly me what it is ???????

    Then I woke 6 months ago to a full left ear, with usually stays for a couple of days ( knocks out the low frequencies during fullness ), followed by a loud, low drone ( hum ) for a few days. As it is cyclic, it goes to back to full / drone / full / drone etc.

      I too have had many GP visits, a highly recommended ENT ( said I had damaged my ears through playing, even I have worn audiologist plugs for 20 years ), had 2 audio tests ( perfect hearing ), an MRI, and had acunpuncture, osetopathy, used NETI pots, antihistamines, chinese medicine, decongestants, Dymista, as well as medication called SERC and Moduretic ( which made me almost psychotic ). I have tried almost everything. Next week is a trip to the chiropractor to check neck alignment. I have lost all faith in the medical profession, as they have shrugged their shoulders, say than I am a unique case and I should just live with it. This has impacted hard on me mentally, as I can't concentrate on music with symptoms of fullness or droning. 

    After reading your post, maybe I should go back and demand a CT scan, and try the ear popper ( not sure if they are sold here in Australia ? ). 

    I really hope you are having none of what I can see as almost exact symptoms to me ? Any fedback would be truly greatly appreciated.

    Musically

    Mr Baysman

  • zunelast
    zunelast jon82247

    Posted

    Yeah didn't work for me. I used the ear popper for 2 months. No relief. I have ear fullness and pressure. Tinnitus. I saw two ents who used the nose scope on me and said everything was fine. I also have used 4 cortisteriod sprays and nothing worked. So sadly, alot of people will suffer. Hopefully we will all get better soon! Thanks.
  • fireblue
    fireblue jon82247

    Posted

    At least it worked for you. Do they sell dymista in canada? ENTs have told me that I have ETD but still suffering today. Tried the ear popper too. It sucks
  • nikki62728
    nikki62728 jon82247

    Posted

    The ear popper sounds good but how does this differ to the valsalva manoeuvre? The one where you hold your nose shut and blow out?

     

  • Casey1337
    Casey1337 jon82247

    Posted

    Were you prescribed dymista and also what is the name of the ear popper you purchased?
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