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Eustacian Tube Dysfunction

Posted , 3 users are following.

daniel70316
daniel70316

Hi there,

I am a 21 year old male who is currently suffering from symptoms resembling Patulous Eustacian Tube Dysfunction, where the eustacian tube remains partially open. This causes me to suffer from a feeling of fullness in both ears. I have suffered with this problem for about a year now and it is starting to effect my day to day life. An ENT specialist has recommended I have a grommet inserted. Would this help my current problem and if so shouldn't grommets be applied to both ears if both my ears are affected? Has anyone else suffered from something similar?

Cheers Dan

0 likes, 15 replies

15 Replies

  • kirsty60831
    kirsty60831 daniel70316

    Posted

    Hi Daniel, I have been diagnosed with the same thing have had it since early January when I was ill with cold/flu, docs keep giving me nasal sprays but they don't work and now getting headaches really getting fed up I want a referral to ENT specialist.

    • daniel70316
      daniel70316 kirsty60831

      Posted

      Hi Kirsty. From my experience nasal sprays generally don't work. I have come across one nasal spray called "Patul-End" it's an American brand and dosen't come cheap. This might be the best solution. The only other option for a permenant fix is balloon dilation, which is hard to come by here in the UK as it's not provided by the NHS.

  • oto88861
    oto88861 daniel70316

    Posted

    Hi Daniel,from  one of many specialist i visited i have been also diagnosed with early stage of PET, in my case tubes dont remain open but keep opening and closing during day and causing terrible popping or crackling sounds (for 6 months), in addition to that i also have subjective tinnitus. I am trying to fix the problem by checking how food, weather and stress influence the problem.
    • daniel70316
      daniel70316 oto88861

      Posted

      Hi Otto. Yes I have also started to suffer from tinnitus. I believe this is due to my long-term PET. It's a horrible condition that many people are unaware of. My best advice to you would be to seek a doctor that is willing to perform balloon dilation. This surgery would hopefully revert your tubes back to their normal state and stop the cracking/popping sounds you are experiencing.

  • oto88861
    oto88861 daniel70316

    Posted

    Thanks a lot, Daniel, problem that no Ear doctor takes me seriously, or suggest me some pills with no effect or tell me this is totally normal that ear pops all the time, I need keep trying and find a doctor which would take this condition seriously enough to suggest some treatment as you suggested.
    • daniel70316
      daniel70316 oto88861

      Posted

      I know exactly what you mean Otto. Doctors said the same thing to me that this sensation (pressure in my ears) was "normal" I thought I was going crazy. Fortunately, there are doctors out there that specialise in PET. I'm sure a quick Google search into balloon dilation would bring up some results.

  • kirsty60831
    kirsty60831 daniel70316

    Posted

    Well back to docs yesterday as headaches are getting worse, would seem last diagnosis was wrong i don't have eustachian tube disorder and he doesn't know why previous doctor said I did! Great back to square one, given ibuprofen gel for pains in my neck just behind ears , because its on both sides they are not concerned if it was only on one then it maybe more sinister, basically they don't have a clue and still won't refer me to ENT clinic!

    • daniel70316
      daniel70316 kirsty60831

      Posted

      Hi Kirsty. Have you received a nasoendoscopy (tube up nose to check tubes). This would determine if there is a problem with your tubes. In general you should be feeling fullness or "pressure" in one or both ears if the tube/tubes aren't functioning, effecting your overall ability to hear.

    • daniel70316
      daniel70316 kirsty60831

      Posted

      Hi Kirsty. Have you received a nasoendoscopy (tube up nose to check tubes). This would determine if there is a problem with your tubes. In general you should be feeling fullness or "pressure" in one or both ears if the tube/tubes aren't functioning, effecting your overall ability to hear.

    • kirsty60831
      kirsty60831 daniel70316

      Posted

      Hi Daniel,

      So another doctor contradicted the 2nd and said yes it was ETD and also told me I have Rhinitus.

      ETD not improved at all and has got worse again due to a cold.I haven't had a nasoendoscopy they haven't mentioned further tests I am due to see doc about my glands so will mention the ETD again, I have 3 medival issues none of which they can help with without a lot of pushing it's very frustrating, The EDT didn't bother me is the summer months but as temperature is dropping it is beginning to again is this normal?

       

  • maureen05275
    maureen05275 daniel70316

    Posted

    Hello Daniel

    I am late writing this but I got concerned about some of the replies.  I also have PET with the left tube open enough to cause constant muffled hearing of my own voice and loud hearing of my breathing.  I think it started like yours with a feeling of pressure after a lot of singing or talking.  Then, 3 years ago, it suddenly developed into what I have now.  I have seen 3 ENTs and 3 audiologists.  The first ENT and first two audiologists misdiagnosed.  I made sure the 3rd audiologist knew what she was doing and was going to do the right testing so got the right diagnosis.  Both of the last two ENTs corroborated the diagnosis, neither said there was anything they could do about it.  My research has confirmed this, with some surgeries quite dangerous.  The balloon dilation therapy is for closed Eustachian tubes not stuck open ones.  Grommets will not help; again they are for closed Eustachian tubes. The Patulend may help (but as stated earlier, it is expensive); I have not tried it but some have had relief.  One contributor to this forum said she had had surgery with bone cement used to close the tube(s?) and it had worked.  Previous attempts to block the tubes that I have read about have had dire effects.  If tubes are blocked you will get mucus build up and probable infections in the middle ear and be in a worse position.  The first of the good ENTs in my case suggested I gain weight and although this did help another contributor to this forum, it didn't help me.  If you are on the lean side, you could perhaps try this.  I am in Melbourne, Australia, and though I saw good ENTs, I think in the USA there is more hope of treatment.  I know this is not giving you the help you want and at 21 it is a very distressing condition to live with but I hope it has helped with your understanding if nothing else.  I hope your PET goes away.  I really, really do.

    Best wishes, Maureen

    • daniel70316
      daniel70316 maureen05275

      Posted

      Hi Maureen,

      Thanks for your reply. My current ENT specialist has recommended balloon dilation but due to this treatment being rare in the UK it is hard to find a specialist who will carry out the procedure. For this reason he has suggested Grommets. Surely this will help to some extent e.g relieve pressure? Even if it isn't a permenant fix. Otherwise why would he suggest this.

      As far as my symptoms go I find myself pinching my nose and doing a sucking up motion (opposite to the valsalvar manouver) throughout the day. This is the only way to remove the pressure for a period of time. This would suggest to me a partially open tube. I have also started to lose my hearing at long range.

      The whole condition is embarrasing more than anything, especially in my line of work. I hope you have more luck than me and find a solution to your PET

      Cheers, Daniel

  • maureen05275
    maureen05275 daniel70316

    Posted

    Hello Daniel

    I do not know how your ENT can use PET and Balloon Dilation Therapy/Grommets in the same breath!  If you have an already open Eustachian tube, the balloon dilation therapy will just open it more and grommets will do absolutely nothing because you do not need another opening if your tube is already open.  Now when you said "As far as my symptoms go I find myself pinching my nose and doing a sucking up motion (opposite to the valsalvar manouver) throughout the day. This is the only way to remove the pressure for a period of time", I was immediately reminded of something I found on the Internet when my symptoms first appeared.  It is a lecture given by an ENT who had specialized in Eustachian Tube disorders for about 10 years and what he says seems exactly what you are describing so I am recommending that you view his lecture.  It is on U Tube and goes for about 20 mins.  You may need to look at it a couple of times (I did) because he is talking to other ENT specialists and goes pretty fast.  You need to enter "17th Causse Otology Course June 25-27 2015 Patulous Eustachian Tube Manohar Bance" into Google (or whatever you use) and it will come up.  I cannot recommend highly enough that you view this.  Both PET and a closed tube will cause pressure (with PET it is the pressure of the air coming up the Eustachian tube) but the therapies you are being recommended will not help you if you have PET.  Please, please, please look at this lecture.  He is talking about people who 'sniff' like you and I doubt the ENT you have seen has ever come across this.

    Again, best wishes Daniel.  Maureen

     

    • daniel70316
      daniel70316 maureen05275

      Posted

      Hi Maureen,

      I found the lecture very helpful and insightful. The symptoms he talks about definitely resemble mine. I have attempted to contact Dr Manohar Bance from the video who currently has a practice in Cambridge. Hopefully I will be able to schedule an appointment with him or one of his colleagues and finally get some help for my condition.

      Thanks again,

      Daniel

  • maureen05275
    maureen05275 daniel70316

    Posted

    Hello Daniel

    Thanks for letting me know.  Top marks to you for looking at that lecture.  It sounds very promising that you are in a position to see the man himself or one of his colleagues.  I am so glad I could help and please let me know how you get on.  Best of luck.

    Maureen

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