I hate ETD

My next appointment is on Wednesday.  Eight years of fluid behind the eardrums, a chlosteatoma, surgeries to place tubes for drainage, surgeries to repair holes from tubes for drainage, then fluid filling up when eardrum is repaired and without a hole.  Severe hearing loss in right ear 5 weeks after tympanoplasty because it is full of fluid.  The constant sound of my heartbeat in my ear.  Pressure.  I have been reading and investigation Eustachian Tube Balloon Therapy and my ENT, who is very skilled and knowledgeable in all areas of the ear, has agreed to do a scope of the nose and throat to determine if I would be a candidate for this procedure.  I would appreciate knowing more from those who have had this procedure, and also what questions I should ask on Wednesday.  This is more troublesome and annoying than I can properly explain.

Could you please explain more.

I had the tympanometry ( the device they put in your ear which measures the pressure) many times and it came back or normal or close to normal everytime. Are you saying theres a wrong and right way to do it ?

I don't know if mine is etd but mine feels full on the right side and thumping like crazy when I overexert myself like cleaning up.i can't take it anymore....cant sleep....cant think ....out of money for constantly going to doctors ...im losing my mind

I'm sorry if I have confused you, M992.  I was talking about the otoscope being used merely to look inside the ear at the eardrum.  I am sure readings of the pressure in the middle ear are accurate.  It is true, however, that if you have the relatively rare patulous (open) eustachian tube, you will get a normal pressure reading just as you will if there is nothing wrong with the eustachian tube.  An audiologist I saw dismissed the idea of my left ear being patulous as she said she "would have seen the respiration coming through" and an ENT later also looked for movement of the eardrum with respiration but neither saw this.  There is a special test that has to be done involving looking at the pressure with normal and with heavy breathing.  I found an audiologist who would do this test.  She said she had never been asked for it before and practised on the people in her clinic before testing me.  She then said she had never seen the result she got for my left ear.  The ENT I saw on her recommendation confirmed the diagnosis though he could not see the movement of the eardrum.  I hope this has clarified what I said earlier. 

 

Hello bjhodg.  I'm afraid my problem is different to yours although I know how debilitating ear problems can be and I see that you have suffered much.  I suggest you go to Patient Forums, select Ear Problems and then type into the search box 'Eustachian tube balloon dilation'.  Over the past couple of years I have read many entries where people talk about this procedure.  Some are just asking the questions you are asking but a few have had the procedure and you might be able to learn something there.  Best of luck.

Hello Maureen,  I found your comment most interesting.  However, if our ear/ears are blocked it's obvious to me that we have ETD....why else would they block.  I find it very strange that this sort of condition can come on out of the blue and seems to stay with us.  I've suffered this condition for almost forty years.  My ENT consultant won't perform Balloon Dilation, or put in tubes due to my chronic condition of Sinusitis and Allergies.  It's something I've had to learn to live with and tolerate.  Some days are better than others, but I have to take prescription mediaction to keep it in check.  I've had 7 perforations already this year in my left eardrum, however the mucus is so thick and sticky it just will not drain, so I have a procedure called microsuction to remove it all....feels wonderful once done.  Maybe our tubes just get smaller for some reason.  Not too sure why our pressures change too.  It feels different when pressure blocks the ears, than mucus sticking them together.  I was told by my GP that if the eardrum is shiny, that's good.....shame we can't look down our own ears.  But we don't need confirmation when our ears are blocked, as it's such an awful condition we know.  So wish there was a permanent solution for this problem, as it causes deafness and tinnitus too.

Kind regards

Anne

Me again Maureen, I forgot to ask.  What is your problem with your ears, if you don't suffer Eustachian Tube Dysfunction ??

Anne

Hello Anne.  I have read many of your entries.  Sometimes my condition is put under the Eustachian Tube Dysfunction umbrella, as it certainly is a dysfunction but other times it is put in its own category and labelled PET.  My problem is a patulous left eustachian tube.  It is stuck in the open position.  As a result I hear my own voice, distorted, in my head whenever I speak, hear my breathing loudly, hear chewing noises.  It goes away briefly if I bend (but can't - bad back issues) and goes away when I am lying down (certainly a blessing) which the ENT specialist said was 'classic' for this condition.  Before these noises (autophony) became permanent, for many years I felt a fullness in that ear, especially initially after a singing practice (was in a choir but an impossibility now) and as the years went on this became more frequent.  Because it felt like a blockage I thought it was a blockage and hence, I thought it was your eustachian tube disfunction.  In my case, however, it is the air rushing up the eustachian tube that gives that sensation of fullness. The ENT specialist told me to put on weight as a patulous eustachian tube can be caused by weight loss (but also - how? - by weight gain!).  I have not lost much weight and have tried to put some on but have gained only about 2 kg in four months and there is no difference in the ear symptoms.   Within the last four months I have experienced something else that I cannot explain.  The ear 'crackles'.  It can last for hours and I thought it must be thick mucus in the middle ear but it stops when I go to bed and does not reappear next morning.  I suspect (but specialists are dismissive) that my condition is linked to an autoimmune disease from which I have suffered for 47 years, Sjogren's Syndrome; this destroys moisture-producing glands.  I write this at length to you because I think you might be interested, even though it is not your problem, because you take an interest in so many other people.  I live with it - there is no option to do otherwise really - but it is isolating and rather soul-destroying, just like the condition which you have to bear.  I take comfort from these forums which have become for me like the family I do not have and I thank all who add their bit.  I wish you well Anne.

Maureen

Aah! that was a lovely reply Maureen and thank you so much.  I too sometimes suffer the air in the tubes, which is, you're right, totally different from sticky mucus sticking them together.  Are you in the UK ? I bet you're in the States.  Can't see many UK followers on this forum.  But of course unless we ask the person, we wouldn't know.  I usually do ask, as some of the over the counter medication is either a different name or they can't buy it.

When someone is really suffering and God knows I know how it feels, I recommend they request Prednisolone steroid tablets.  Once again I've just finished a course and have felt wonderful, right up until the cycle started all over again.  Now back to square one.  But using quit stong nasal drops at the moment that can't be used for longer than 6 weeks.  So not too bad at present.

My worse fear is lightening striking twice (which it could) and getting Pnuemoccal meningitis again.  It's hard to believe how many years I been suffering this wretched condition that caused it to happen.  the mucus sat in the eustachian so long it turned bacterial, crossing the blood brain barrier and going to my brain.  A very nasty episode and wouldn't want to have to go through that again.  Any sign of an earache, that would indicate a possible infection I'm put on antibiotics.  Of course all the antibiotic treatment leads to a compromised immune system, so it's a catch twenty-two !!

Great writing with you Maureen and hope you get yourself sorted too.

Kind reagrds

Anne

Hello again Anne. 

Thank you for your warm reply.  This is just to tell you that I live in Melbourne, Australia, though my roots are in Ireland, Scotland and England.

With best wishes always

Maureen

Thanks for reply Maureen, I once had relatives in Melbourne......so I'm talking with an Ozzie.  I love watching the Housewives programme, as sad as that sounds.  But mainly all reality on TV these days.  Melbourne ladies is good.

Do keep in touch with your progress.

Kind regards Anne (in little ol' England)

 

Hello Maureen,

Haven't heard how you are getting on with problem ears.  do let me know.

Kind regards Anne

Hello Anne,

You sent me your message the night before I was to have my second ENT appointment for the year so I delayed my response.  I first rang for this appointment about last November, cancelled it in February after getting a wrong diagnosis from an audiologist, rebooked about March but had to wait till 1st September.  This did not surprise me as I selected this man because I thought he sounded like the best and I found out on Friday that he is, in fact, a Clinical Associate Professor at the University of Melbourne.  He was very nice but, as I expected, there is nothing he can do for me.  He is the only one of the three ENTs I have seen that did the proper test when looking into my ear and he saw the ear drum moving as I breathed.  He was able to reassure me that the constant movement of the ear drum with speech, respiration etc. would not cause damage to that structure and also that I would not be more likely to get infections as some sites claim.  He asked about weight loss but I have lost little weight overall and in the past 4 months have managed to put on 3 kg without any change to the symptoms.  He suggested I try using nasal sprays with extra salt to cause inflammation and increase mucus secretions but since I have the autoimmune disease Sjogren's Syndrome, which has decreased all my secretions to almost zero over 47 years, I very much doubt that this will improve anything.  So I just have to live with the discomfort and grief it causes.  In Australia we have what is called Medicare but specialists can charge what they like.  Medicare has a scheduled fee which most specialists think is way below what they deserve so I was expecting a hefty fee from this very eminent specialist and to my great surprise, he charged only the scheduled fee!  So that was a plus.  At least I have tried.  I have not sat back and done nothing.  So now I am more ready to accept what cannot be changed.

Thank you, Anne, for your continued interest.  I hope you are having a better time with your chronic condition at the present.  We are into our 3rd day of spring here but no one seems to have told the atmosphere that it is supposed to be sunny and warm!  I hope your autumn and winter treat you kindly.

With best wishes always,

Maureen

Ahh !  thank you for your reply and so sorry to read it's something you just have to live with, like myself.  I'm dreading coming off the Flixonase Nasules Drops as I know from past experience the cycle will start all over again....shame these have to be stopped after a course of six weeks.  It's just wonderful to be able to smell and taste my food again, sadly that will go too.  The Flixonase Aqueous Spray is ok, but no where as good as the nasules.  I'm due to see my ENT consultant in February, but like yours, there is nothing he can do for me either.

I'm hoping we won't get a bad Winter this year, as I suffer big time from the damp weather, with the spores etc.  So many suffering like you and I !!  I can't complain about our Summer this year, been pretty good and also had quite mild Winters too for the past few years.

So you take care and hope your probs. won't be too bad for you to have to tolerate.

Kind Regards

Anne over here in little ol' England