Eustachian Tube Dysfunction / Ear Infection

Sadly, a little over a year ago I managed to acquire an ear infection.  I was swimming at a local community pool, which wasn't exactly the cleanest (small particles, bugs floating around, etc) and I managed to suck some water up deep into my sinuses.

Immediately afterwards, I had the sensation of fluid sloshing around in my ear.  It was very clear (to me) that there was fluid in my ear, but it had not dawned on me at the time that it might have gotten sucked up into my Eustachian Tube during all of the thrashing about I did in the pool.

After a few days of trying to 'clear' my ear (and probably making it worse via the valsalva maneuver) I ended up in a severe amount of pain suddenly one night and went to the ER.  There, they prescribed drops for both pain and an antibiotic.  The severe pain eventually subsided, but the irritation has not since.

Here's what I've got going on since then:
Swollen tongue (particularly in the back, and on my left side - as it was my left ear that was afflicted)
Painful swallowing (this is extreme sometimes, and is the most painful aspect of the ailment)
Feeling of fullness and severely affected hearing quality
Constant mucus drainage (I do mean constant, in that at any given moment I can hock up a disgusting thick ball of mucus)
Mucus with 'fungal' appearances (dark brown splotches scattered within the normal white/yellowish mucus I'm used to seeing)
Inability to sleep (I have not slept a full night, as I tend to wake up in pain if I roll to my left)
Complete exhaustion and irritability
Pain, pain, pain (this comes and goes, but when it's present, it can almost be like it was to the point where I had to visit the ER - I actually thought I was going to perform a myringotomy on MYSELF one night... mind you, not literally, that's just how maddening it has been)

I have seen two GPs, an audiologist, and two ENTs.  On Thursday, I plan to see my third ENT.  I've also spent close to $3,000 on visits, antibiotics, steroids, and antihistamines that never helped (and actually seemed to make it worse before I finally stopped taking them).  Yes, I took inhalant corticosteroids and antibiotics for almost a full year.  I literally blew all of my disposable income, and now I've had to 'wait' before attempting to see another ENT since I knew I could not afford another medical bill.

While waiting, I've tried various other 'home remedies' also:
Cut the dairy/sugar from my diet (to no avail)
Neti pot, and a combination of Afrin + Neti Pot solution
Gently steaming my sinuses
Blowing my nose with my head upside down
Lots of anti-fungal supplements (Papaya, Acidophilus, etc)

I'm still here.  I'm still hurting.

The last ENT I saw literally said these words to me, verbatim, before I decided never to return to her:
"Well, the next step would be a myringotomy, but I have to tell you that there's a chance of hearing loss, and that most people who have your symptoms do not improve after that surgery."

Being a musician, I decided I would only take that route as a last result.  Her inability to be reassuring or confident in her own decision (let alone answer my questions adequately) turned me away from her - despite a few visits.

I'm in tears some nights, and I *know* that I need actual medical help in the matter - but I'm beginning to lose faith at this point.

So.. I need some advice:
What am I missing as far as potential treatments, or causes for this chronic condition?
What should I focus on with my ENT visit on Thursday?  Is there something specific about my story I should emphasize or point out to this new specialist?  (He should have full medical history of the condition also, as I have released my records to them)
Is there *anything* that someone can offer as far as advice or even a specific specialist that might have more experience in this particular condition/ailment?
The 'brown gunk' that I see large chunks of in my expectorate.. why do I not see anyone else mentioning such a symptom?  Is this indicative of something else going on?  Should I be concerned, or is this actually common?

It's 2:30 AM here... and I can't sleep.. again...  :(

Hopefully you all can lift my spirits.  I'm the type to follow-up too, so feedback is surely welcome.

(Thanks for taking the time to read all of that too, lol - I tried to include as much detail as I could)

Sincerely,

gravity
Nashville, TN

[yrrep]

You poor thing.  Sounds like you're having a tough time with this issue.  I don't have any answers, but I do hope you know we're listening to you and hoping your well soon. :-)

[godgravity]

Thank you for the support.

I went to see another ENT yesterday, who was surprised at the multitude of issues.

He was reassuring. He is going to pore over my history with my other doctors and see if he can't come up with an alternate solution.

He said I could be a rare case of blowing out my middle window (? Laymans term apparently) that doesn't happen often, but is certainly possible given all of the valsalva maneuvers I was doing for a while.

The Neti Pot seems to help dramatically, so I have been taking it with me when I travel.

Also, using the valsalva (gently) to push some Afrin up my Eustachian tube also seems to help some meanwhile.

Thanks again for your support!

-J

[Stigmatisert]

I thought I had a terrible history.

I had terrible throat pain from May 2011 to July 2012. From Nov 2011 it was so terrible that I couldn't take care of myself. Unfortunately, this happened after what I perceived as personal crises, I had already asked for psychological help. My GP called my throat pain for "lump of anxiety". I deemed I did not have anxiety. And when I told I got a small painrelief of Paracetamol, they called it 'placebo-effect' (Thanks a lot listening to the patients version).

I got out of the "psychiatric grip" by January 2012 and asked for all kinds of examinations of my troat and swallow. "No asymmetri - no pathology" all the way. Just made the GP more confident with diagnosing me with psychological problems. When I said "I'm through and finnished with those psychological matters", my GP replied "Then you've surpressed the problems". (Thanks again for listening to the patients version). I then changed to another GPs twice, because the first one continued the psychological approach.

By june 2012 I told the GP I have now: -The only thing I know that can create so much pain and still be unvisible, is air!. It took me three weeks to find the mechanism for air trapped in swallow. I tried a neti-pot, and suddenly - for some minutes - my swallowing functioned perfectly and an hour later og two I had no swallowing pain. I didn't understand the mechanism immidiatly and the swallowing/throat pain came back - as terrible as before.

Three days later, I started using the neti-pot again. It worked. - This is the way, I thought. Then I did a fatal thing: I combined using neti-pot and Vasalvas manoevre, because I was convinced my eustachian tubes were clogged with some "foreign" body or liquid (tooth-paste, was my first idea). I washed and pressed, washed and pressed, until my ears started to ache. I even lost my hearing ability for some time.

Then it started: I started to swell around my left eye and left part of my nose. My head ached. It was not good, but anything better than the devilish pain I had had in my throat for more than a year. I continued. I don't remember how soon my "head-ringing" came, but the ringing and head-ache have persist and my swallowing-issue is not gone.

It feels like my eustachian tubes is sticking the walls together, so the air from my mouth doesn't elevate, but goes down my throat at "excessive" air while I swallow. After the swallow, a gurgeling or squeezing sound come from my throat. It's the excessive air coming up. Thank god it comes up, becaus it's wery-wery painful having trapped in the swallow - and the swallow "misunderstands it" as food or drink, fight getting it down.

The pain in the throat is muscles fighting. Not a foreign object I was convinced of, when the pain become constant.

Why hasn't any doctors thought of this? The first thing I reported was throat pain and squeezing sound after, and that I could press up "air-filled" salliva from my throat (or more specific: my swallow), and then the pain relieved.

So, use the neti-pot, but, please, don't get another painful problem by blowwing the water again and again up all the way to the ears.

I'm afraid I've ruined my inner ear. I could see blood on my tympanic drum some days after doing this. (I used an inspection camera I have)


I dream of the "head-ringing" to go away. I dream of getting a surgery or something to substitute my sticky tubes with plastic pipes or something. I dream of getting my life back...