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
anne05078 Melbassett
Posted
Hello Mel, I feel for you as I too have suffered Eustachian Tube Dysfunction for many years. I live in England and fortunate enough to be able to get Flixonase Nasule Drops....they're stronger than the Flixonase Aqueous Spray that you're currently using.
Such a shame in the US you can't get these drops. I checked it out with my nephew who is a pharmacist, who also lives in the US.
The only thing I can suggest, to enable you to get some pretty quick relief (within a week) is ask your doctor for a 20 day reducing course of Prednisolone steroid tablets. Because your ears have been clogged for a long time, you will need longer than a weeks supply. These tablets will get rid of all the inflammation in your tubes and will help drainage.
I was on them in April. I rarely get colds, but suffer Rhinitis, Sinusitis and Allergies, plus Post Nasal Drip....all that block the ears.
I've now had the longest period ever and been free of the wretched condition for over 6 months. The spray you're on just isn't strong enough to unblock your ears.
I do hope you get relief soon and let me know if you are in fact prescribed the Prednisolone, in my own experience they are the only thing at this stage that will help. A one off course won't hurt you. I have to be on them at least every other year when I can no longer stand ETD.
Kind regards
Anne
michael11955 Melbassett
Posted
I don't wish to be downbeat Melbassett, but if you take a look at my comments on this site it might just save you lots of hunting around for treatments or cure.There isn't one.I do like your picture though.
anne05078 michael11955
Posted
Hi Micheal, I think you're right there doesn't seem to be a cure for this absolutely awful condition of ETD. However, there is relief out there and at present I'm almost 6 months in after taking the Prednisolone and Flixonase Nasule Drop, which I'm now down to only using the drops every 3 days, or when I feel the ears start to block up again.
I know it's an ongoing problems, but to get some months of relief is just wonderful and if other people on this Forum follow my lead, hopefully, they will get relief too. Because I've now suffered so many, many years and feel for people that are now suffering too.
As I've said before, General Practitioner's an ENT Consultants really don't know how distressing this condition is unless they've experienced it for themselves. Not life threatening, unless like me, it caused Bacterial Meningitis....then of course it's taken seriously, but too later then !!!
Some people that end up with blocked ears after having a heavy cold, may only need to have one course of the Prednisolone to get this condition of ETD under control and may find it won't ever return.
I can only think of Colds, Rhinitis, Sinusitis, Allergies, Post Nasal Drip and when people fly that causes our ears to block. Some have found that TMJ could be the cause and others have found it's the Sternocleidomastoid Muscle that affects the neck, head, eyes,sinus, ears, throat and dizziness.
So all of these conditions are worth looking into.
Anne
kelly91202 anne05078
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Melbassett michael11955
Posted
Michael11955, I actually have read through the other discussions and responses on this particular group. I posted my own, because my ETD is on the opposite end of the spectrum of others- I actually have zero fluid in my ears vs excess fluid. My ENT said it would be much easier to understand/potentially treat or at least alleviate my symptoms if I had fluid in my ears causing my ETD. Mine seems to be more of a vacuum within my ears. It has also affected my ear drums, as they are tighter now. Before my tympanostomy tubes, if I inhaled, my ear drums would pull inwards, creating a very uncomfortably and painful sensation. I wasn’t so much hoping to find a cure on this board, as I am also aware that one does not (yet) exist, but rather hoping to find a group of others who are also suffering and could potentially share any of their own triumphs with ETD to help me find light at the end of this tunnel. Kind regards.
Melbassett michael11955
Posted
anne05078 kelly91202
Posted
Hello Kelly, you can certainly get the Prednisolone, they are the best thing to go on for a quick resolution. Must be a long enough course if you've been suffering blocked ear for a long time....a short course won't work, must get rid of all the inflammation. You will be able to get the Flixonase Aqueous Spray, sadly, you can't get the Flixonas Nasules over there though. However, once the Prednisolone have done their job the Flixonase Spray (your call it something different) but it's the same medication, you should find yours ears will get better. If you suffer Allergies and Sinus issues you'll have to use the spray twice daily forever......no good using it on and off, a it has to build up.
Anne
anne05078 Melbassett
Posted
Hello Mel, Your ears needs air equalisation....this sometimes happens to me and is totally different, like you say, than fluid in ears. Don't like that feeling at all and comes on out of the blue for me. Fortunately, for me it doesn't last long and it happens when breathing in sometimes.
Anne
michael11955 Melbassett
Posted
I guess I'm lucky in a way,insofar as I don't actually have any pain with my problem. AlI have is immense pressure that is very hard to bear.It's like having air pumped into my head & can only be relieved by lying down for at least half an hour until it clears.
This message is for Anne 5078 too.
michael11955 Melbassett
Posted
Melbassett michael11955
Posted
Melbassett anne05078
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Ver. Melbassett
Posted
Hi Mel, what you're describing it the opposite of ETD. Are you aware of PET which is more debilitating than ETD. And yes P.E tubes can make this worse. Could you describe your symptoms in more detail and if specific things seem to make it worse? -V.
anne05078 Melbassett
Posted
Sadly, Mel it's the same as suffering ETD but with a difference. No doctors or ENT specialist seem to know what to say or do about this problems. Is it worth you trying Prednisolone too, just in case you have inflammation.
Anne
michael11955 anne05078
Posted
Hello Anne 05078. At long last the medics appear to be coming clean & confirming what I've been saying for a very long time.How difficult is it to say "Sorry but we don't know".
anne05078 michael11955
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michael11955
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Thanks for your response Anne.I find it quite remarkable that they can do complex surgery remotely & even change your sex,but finding treatment or cure for our problem,which to a lay person appears relatively simple,totally impossible.
anne05078 michael11955
Posted
Mad isn't it....one day though. I consider myself so lucky and hope I'm not
talking too soon. My ears have been good for 5 months now and I
haven't had to use the Nasules for 5 days now. I think I'll use them in a
minute though, just to make sure. Would absolutely love to think it would
never come back, but I'm sure that's a hope too far.
Why don't you try what I've recommended Michael ??
Anne
michael11955 anne05078
Posted
Nice to hear from you again Anne.I'm in U.K. & haven't heard of Nasules. What are they ?I actually don't have ETD .It was incorrectly diagnosed by two ENT specialists.What I do have is huge pressure in my head & ears,but thankfully no pain.I'm advised by them that they don't or can't name the condition & there is no treatment or cure.
anne05078 michael11955
Posted
Hello Michael, if you have pressure in your ears, surely that is in fact Eustachian Tube Dysfunction. Good you're in England as the US can't get the Flixonase Nasule Drops....they come in a green box. You use them by lying your head over the bed, one nasule between both nostril am/pm
I feel brilliant and haven't had to use them for almost a week now, but once that feeling of blocked ears comes back I will immediately use them.
I've recommended them so much on this Forum and for those suffering really badly, a course of Prednisolone steroid tablets too.
All I can go on is how both of these medications have helped me. A lot of ETD is inflammation and the steroid tablets clear that all away.
Maybe some doctors just won't prescribe them. Luckily for me mine does and I usually have to take them approx every 3 yrs....then on them Nasules again.
Anne
michael11955 anne05078
Posted
Hi again Anne I've been prescribed Dimistal & also Nasofan over the last year & one other the name of which eludes me .None of them had any effect at all on the pressure I get in my head.All of them did clear my nasal passages very well which I didn't have any problem with in the first place.Thanks for your interest Anne.