How do I get a doctor to take me seriously?

[DaveCouldUseYourHelp]

In August I followed bad advice and did a sinus rinse and then blew the water back into my middle ears using the valsalva maneuver. I managed to overfill the middle ear and felt a twinge of pain lasting 3 seconds. The next day I noticed my left ear screaming, so I stupidly did the same thing again, again overfilling and feeling the same pain, this time I noticed the screaming increase immediately.

I didn't know what I had done to myself until I realized at the end of September I had basically given myself a Perilymphatic fistula. Talking, nodding, turning my head, eating, all exacerbated it. Same with driving long distances on the highway (but I'm thinking it may just be long term loud noise exposure from the road/wind noise).

I did an MRI (which of course showed nothing, you could have a hole in your eardrum and it wouldn't show with that) and saw a neurotologist in October who basically said he thought doing surgery could make it worse and it would die down.

I took 2 weeks off of work to try to let it heal. During that time I felt dripping of "water" inside my ear (which actually would make it temporarily quieter), and pain in my ear. It didn't heal. Doing the littlest thing would hurt it again (literally I looked down slightly and hurt it again). It only got louder and worse.

So in November I saw another neurotologist. He seemed to be out of touch with reality. He told me the "water" dripping I had felt was in my ear canal not middle ear (I put a pinky up there when I felt the water...it was dry) and that I couldn't possibly be feeling any pain from what I had done (I have the sensation of pain I can feel right now inside my ear). I realize the middle to inner ear doesn't have nerves...but I've got some sensation in my middle ear.

Also he told me taking prednisone for it (the only thing that has helped relieve it at all) was a mistake! The guy was backwards.

Again his diagnosis was "just live with it." I CAN'T LIVE WITH THIS! YOU TRY LIVING WITH WHAT SOUNDS LIKE A STEAMING TEA KETTLE GOING OFF IN YOUR LEFT EAR CONSTANTLY!!

My guess is because I didn't report dizziness and I didn't get it from scuba diving that he didn't believe me.
I've given myself HALF A FISTULA. Maybe that "water" I've been feeling is CNS fluid or maybe just serum but in 4 months it hasn't improved any.

I've torn the round window in my middle ear. From reports I've read of people with similar damage it doesn't get better even a year later. They say to get a PLF surgery within 47 days well, I'm at day 120 something.

I know surgery can fix this, I just need someone to go in there and see the damage I did and repair it.

I've also been experiencing my right ear sing along with my left from time to time. From what I understand this is called "Hydrops" and is caused by a CNS fluid imbalance in the ears.

Why damn me to live this way? I need someone to take me seriously and AT LEAST JUST LOOK INSIDE MY MIDDLE EAR WITH EXPLORATORY SURGERY! They will see the redness while it is still there.

Also, how expensive is a PLF repair surgery? I have to pay out of pocket.

 

[tbone1004]

call DAN, talk to their people, get a recommendation for a local ENT vs. neurologist

 

[flyboy08]

Florida doctors are only good for the geriatrics's.....get a real Dr...NYU, Duke, Columbia....

 

[Wookie]

DoctorMike is a Columbia-trained ENT. Will that help?

 

[tbone1004]

@Wookie if you tag him properly

@doctormike

 

[Duke Dive Medicine]

Dave,

Yours is an unfortunate situation, but you're probably not going to get any more information here than you did in the previous thread you started:

Gave myself a Perilymphatic Fistula (PLF). I need help

At the risk of sounding confrontational, there's no way that you can "know" that surgery will fix this, and I doubt that anyone is going to do exploratory surgery on your middle ear this far out from the injury. It's not without risk and would be unlikely to be of any benefit. DoctorMike might have more to add but I think he was pretty clear in the other thread. I do feel for you... I suffer from constant tinnitus that ranges from mild to nearly debilitating.

Best regards,
DDM

 

[Altamira]

call DAN, talk to their people, get a recommendation for a local ENT vs. neurologist

He is seeing a Neurotologist, not a Neurologist. I made the same word mistake the first time I read his post. I had never heard of a Neurotologist, but after looking it up, that is probably the medical specialist needed for the problem.

 

[Rred]

"Neurotologist" could be overkill, since the nerves and more complex functions of the ear are not in question. Gross physical damage to the structure and by now potential infection are more likely, and an ENT could deal with that. Absent better diagnostics, the OP's faith in what can only be exploratory surgery, is too optimistic. I had a friend spend three weeks totally off the planet from "anaesthetically induced dementia" following routine surgery. Apparently, one of many things the surgeons don't discuss much.
MRIs are like knives: They are not all the same, and the results vary greatly with the skill of the user. A HIGH RESOLUTION MRI taken from the right angle could sure as hell show a punctured eardrum, but then I've also seen a trained radiologist totally miss things that I have seen on the same xrays, standing right next to them. (And later confirmed.)

So...gotta cast a vote, CALL DAN. Speak to an ENT or better who is familiar with "water in the ear" and where and how to do the proper diagnostics, before you even think about having some allegedly qualified surgeon do exploratory surgery IN YOUR HEAD. Where they can deafen you, among other minor collateral damages. Get a second opinion, a second diagnostic, and speak to two or three surgeons, before considering any one of them.

There are some good docs in Florida. But also, a very high number of butchers who moved to Florida because the state has such loose practice laws. "Measure twice, cut once."