Desperate for a solution - chronic Eustachian Tube Dysfunction
Posted , 15 users are following.
I am 23 years old and have been suffering from chronic Eustachian tub dysfunction (ETD) for almost 2 years now. Just before my graduation from university in May 2016, I got an extremely bad cold, resulting in stuffy ears (what I fondly refer to as my earmuff sensation). Unfortunately, my ears never went back to normal.
Finally, in July 2016, I went to see an ENT specialist at Vanderbilt University and he diagnosed my ETD and told me that, at that point, the only option was to wait it out and it may resolve itself. In November 2016, I visited another ENT in Miami, FL to get a second opinion. He confirmed my ETS diagnosis and told me to see my original ENT.
In March 2017, I received the ballon dilation procedure with the ACCLARENT AERA device. My ETD did not improve. In August 2017, my ENT informed me that my Eustachian tubes couldn’t not handle a second dilation procedure and my only option was to receive tympanostomy tubes. I agreed and allowed him to insert them in the clinic without general anesthesia. The tubes did not improve my ETD, in fact, it seems to be worse.
Please- can someone help. I am desperate for a solution to help my hearing return to normal. I use Flonase daily and I have gone through countless boxes of Sudafed in hopes of reversing my ETD. I cry every night. I feel hopeless.
0 likes, 56 replies
larissa61152 Melbassett
Posted
Mel,
Misery loves company! I found this thread because I googled "lingering Eustachian tube dysfunction," in an attempt to find advice and potential RELIEF. I've been suffering with ETD since mid-January of this year, when I had a nasty upper respiratory infection that triggered the ETD. I never get sick, and I'm baffled and frustrated by my impaired hearing in both ears. It feels as if there's glue or taffy in my ears. I've been avoiding social situations--it's frustrating to not hear well and annoying to keep asking people to repeat themselves.
I've seen 2 ENTs. I've taken steroids--no help. Antibiotics--led to some improvement that lasted a week or two. But now the ears have gone downhill again. On the ENT's advice, I've been keeping up with Sudafed & Flo Nase which seem futile. Like you, I've been told by both ENT's that my ear canals look perfect and that I have NO fluid. There's nothing to drain! I wish there was. I am utterly frustrated. With one of my five senses compromised, I feel my overall awareness is diminished. I feel like a grandmother long before my time--missing things in conversation and leaving my blinker on too long when I'm driving.
I'm making an appointment to see one of the ENT's again soon to ask what can be done. Different steroids? Stronger antibiotics? If anything works for me, I'll be sure to return here and post an update. Please do the same! Meantime, take care. I feel your frustration!!!
Larissa
anne05078 larissa61152
Posted
Morning Larissa, May I ask which country you live in. Not sure whether you've
seen any of the many posts that I've posted that recommends nasal drops that I'm currently using that gives me between four and six days relief of ETD before my ears block up again.....I then use the drops, just the once, I then manage to pop the Eustachian open again and all good for almost another week. The steroid sprays no longer help me, only the drops, which are stronger. Just to get almost a weeks relief from this wretched problem is wonderful....smell and taste back too.
Kind regards
Anne
larissa61152 anne05078
Posted
Anne,
I'm in the U.S. Thanks for your input. Are you the ETD sufferer who developed meningitis and lost vision in one eye? May I ask--did you regain vision? I certainly hope so. Reading that post frightened me as to what may arise down the line if the condition lingers. Take care! Thank you again for the message.
--Larissa
anne05078 larissa61152
Posted
Yes, it's me. Sadly, no my sight didn't come back, as it was optical nerve damage. I've suffered, as I've said, for so many years and a long time before it took hold and I ended up with meningitis, ten years in fact. At that time in 1994 I had the most horrendous earache, never get earache with my blocked ears these days. So should an earache occur you must see you doctor immediately and get yourself on a broad spetrum antibiotic, such as Augementin. I was prescribed that, then was taken off them, that's when things started to go awry. Hard to believe I'm still suffering after all these years, however, certainly getting a weeks relief from it at a time, so that's a bonus.
1Peter224 Melbassett
Posted
Dear one....I so so sympathize with you 😭😭
I know EXACTLY what you are going through and how horrible it is! I keep telling people that they have NO IDEA how miserable this condition is and how it completely ruins your life unless they have experienced it themselves. I've even heard of people who had suicidal thoughts because of the great misery it had caused them!
I was just getting better after a year (with no help from any medical treatment at all) but only from intense praying continually....and then I caught a very bad respiratory virus that ended up causing my ears to block up AGAIN! 😩😩😩 And this time I could feel fluid sloshing around in my eustachian tubes and filing up my ears and I couldn't get it to drain out....I was in such great distress. I couldn't talk or hear because of it! Now it had just finally, very very slowly and with extreme patience and prayer begun to lessen. This is a very horrible condition and debilitating and nothing seems to relieve it. I can totally relate to you, dear. I read your post and immediately began praying for you. Don't give up...ask Jesus to send you His healing touch. You will get through this....it's very tough but this will pass...sooner or later. Hugs to you, sweetheart ??
anne05078 1Peter224
Posted
Good morning Peter, I've just read your message and what a lovely reply to Melbassett it was. I too am a Christian and wonder after all these years my prayers have been heard, to have found something that is currently helping me, a year on.
ETD started with me in 1983, even causing me to contract bacterial meningitis in 1994, due to the mucus sitting too long in my eustachian tubes, it turned bacterial, crossed the blood brain barrier and bingo it got me. Losing the sight in my left eye and some loss of hearing in left ear, also vertigo when lying on my left side and tinnitus. To this day I still suffer blocked ears which is probably due to my allergies and sinusitis, which causes me make to make too mucus. I don't know of any other country that can prescribe what has helped me, or at least some of the time to enable relief from this awful condition. I live in England and use Flixonase Nasule Nose Drops, which I use approximately every six days, so I'm getting relief for almost a week, when I then have to use them again, but only the once, I pop my ears when the drops have seeped into tubes and everything is good for a week. I hate having to use steroid based medication, but like you've said it's such a horrible problem and seems to take forever to clear, if at all. My ENT consultant won't use any operation procedures on me, that may be due to what I've been through with the illness.
I thank God on a daily basis that I survived that awful illness. This condition in England is called Glue Ear, which mainly affects children. Grommets (tubes) are inserted into the eardrum, by making a tiny hole to allow drainage. When after 3 months the grommets fall out due to the hole healing over, usually the children don't experience any more problems. With adults it seems a totally different matter.
I also take a daily Cetrizine antihistamine, which helps with allergies.
I do hope the lady whom you've posted to gets some relief soon.
Kindest wishes
Anne
larissa61152 1Peter224
Posted
Thank you for taking the time to write such a lovely, supportive message!
--Larissa
ashley81307 Melbassett
Posted
larissa61152 ashley81307
Posted
Ashley,
Have you had the balloon dilation procedure? It was approved by the FDA here in the U.S just 1.5 years ago, so it seems to NOT be widely practiced yet, from what I can tell in my reading/online research and calls to doctors' offices in the Cleveland area. My current ENT doesn't do it. I'm now looking for one who does in the hopes that this procedure might give me relief. Please post again to let us know if you've tried balloon dilation-- I'm curious what people's experience has been before potentially trying it myself.
--Larissa
kelly91202 larissa61152
Posted
I've done the balloon dilation twice in San Deigo, I flew there from Hawaii. Unfortunately, it didn't work for me and a lot of out of pocket money wasted. I've spoken to only 1 person on-line here that said it was successful. I'm going on 20 months with no relief.
larissa61152 kelly91202
Posted
michael11955 Melbassett
Posted
They just don't know.I had an appointment here in U.K. with a fourth ENT specialist in the last two years.Upon reading my notes he cancelled the appointment,saying that he was afraid he couldn't help .He offered no help or advice at all. I've been informed that actually there are a couple of procedures that are available ,but not on the NHS. Upon asking what these procedures are that I could get by going privately,I was met by blank looks & seemed that they either didn't know or didn't wish to disclose the information.
larissa61152 michael11955
Posted
Michael,
My guess is that the procedure vaguely referred to is the balloon dilation. If you Google "treatment for ETD," you'll find it described in several articles, published both in the UK & US.
It's fairly recent - approved for use in US just 1.5 years ago.
I've found an ENT (in Cleveland, OH) who does it-- meeting him in 2 weeks. But first I'm seeing an osteopath to see if she can help in a "non invasive" way. She & her team doing "Neuro muscular skeletal" treatments. I'm actually waiting for my appt in her office now!
--Larissa
anne05078 michael11955
Posted
Morning Michael,
Being in the UK too, have you not requested the same medication
that I'm using ? Definitely worth a try.
Anne
michael11955 Melbassett
Posted
Thank you & Anne for your replies.Just this morning I've had a letter cancelling my appointment with a specialist ENT doctor. He writes that he's read my notes & seen my scans & is sorry but he has nothing more to offer.That really confirms how little they can help & what I've suspected fora long time
anne05078 michael11955
Posted
You didn't mention the medication I'm using, whether you've tried it or not.
I've had relief for almost a year and now only having to use these drops
once a week when my ears block. I had a very bad episode last year in
April and it seems to be happening again this month. However, with
these drops I've arrested the problem of ETD before it got hold of me
again.
No doubt you've seen my past posts where I've mentioned Flixonase
Nasal Drops....not the Flixonase nasal spray (that no longer works for
me) I highly recommend you ask your doctor for a prescription for these
drops, that's if you haven't already tried them. If not, use them twice
daily, morning and nights, for 6 weeks. You should by then start to
feel the benefit like I have and like I've already said, now I only use them
approx. every 5/6 days. Once they've seeped through to the eustachian
tube, I pop my ears and they clear for another 5/6 days, if I'm lucky.
This week I've used them once a day for 3 days and I think that's due
to the pollen that's now on trees for the next few weeks.
With Eustachian Tube Dysfunction we eventually learn what causes it,
or some of us do. It's the strange's condition that only seems to affect
some people and not others.
Do give them a go, you've got nothing to lose. They come in a Green
Box.
Good luck
Anne
kelly91202 anne05078
Posted
Hi Anne, what has help you is called "Flixonase"? Nasal spray? Wonder if the states has it?
kelly91202
Posted