An ENT Doctor with Tinnitus

[TuxedoCat]

It's many of my patients who couldn't care less, not me, just to clarify.

@brownbear

The point was that the patient must care since they have come in to see you, they must be seeking help. It's possible that their actions may be a defense mechanism of sorts, but if offered an effective treatment they would gladly take it.

Its nice to know that you take an interest in those suffering and see them for regular follow-up, but still disheartening to know that this would not have happened except that you were stricken with this horrendous condition.

I could say more, but I won't. Its not fair for me to take out the whole of my frustration with ENTs on you, especially since you are a more caring individual and not representative of the profession as a whole.

Kind regards, TC

 

[brownbear]

but still disheartening to know that this would not have happened except that you were stricken with this horrendous condition.

Totally agree, no excuses

The point was that the patient must care since they have come in to see you, they must be seeking help

You are not quite right there. Many people have been coerced by family to see me about their hearing loss and tinnitus and have no interest in intervention. It's actually a pretty cliched thing. The nurses are normally joking with them on the way into my room that their other half made them come.

 

[TuxedoCat]

You are not quite right there. Many people have been coerced by family to see me about their hearing loss and tinnitus and have no interest in intervention. It's actually a pretty cliched thing. The nurses are normally joking with them on the way into my room that their other half made them come.

Interesting, they were coerced, but they still came to see you.

My hunch would be that they've been told by the GP that nothing can be done for the tinnitus. Plus they don't really understand about brains making noise, but they've been reassured by doctors, who are the smartest people on the planet, that tinnitus isn't dangerous so no worries there. Having hearing aids is a stigma and an added expense and something they'd have to go out of their way to take care of. So what's the use or sense of it? Nothing can be done about the tinnitus and just turn the volume up on the television for free, no batteries, domes or wax guards required.

So it may not be that they don't care, it may be that they don't care for any of the limited and ridiculous (white noise + tinnitus = double the noise) options available and don't see how any of it will improve their quality of life enough to make the extra effort worthwhile. They make a value judgement.

I hope you or someone in your practice will consider feeding back to your professional organizations and NHS that more tinnitus research is needed because you need effective treatments for your patients, even the ones that ostensibly don't care.

Thanks very much for taking an interest in those severely affected by tinnitus.

Kind regards, TC

 

[Ecip]

@brownbear
Hey Doc,
Do you agree with the statement that "your tinnitus isnt getting louder, it's just your perception of it", and what would your response be to such a statement from a fellow ENT?

 

[brownbear]

what would your response be to such a statement from a fellow ENT?

I would not respond, I would just look them in the eye with a steely glare.

 

[jay777]

Well I have no miracles, so the usual:
For hearing loss - Aiding or surgery where correctable (stapedectomy, ossiculoplasty, BAHA, CI etc)
For sudden hearing loss - IT steroids, HBOT occasionally
For Meniere's - IT steroids/Gent, rarely saccus decompression or total osseous labyrinthectomy
Also - CBT, Sound therapies, mindfulness etc
I am not in a cutting edge centre offering new research with tinnitus, but do get involved with collaborative work - so far none of my patients have benefited from any novel treatments.

Doc can you tell me where I might find a surgeon who will cut my auditory nerve?

Would you induce coma or give ECT as a possible treatment?

 

[Bill Bauer]

Doc can you tell me where I might find a surgeon who will cut my auditory nerve?

Try India or Mexico. But your tinnitus might get louder after the procedure.

Would you induce coma

Unfortunately, I doubt you will be able to find a doctor anywhere in the world who would be willing to experiment with inducing coma to treat tinnitus.

 

[brownbear]

Doc can you tell me where I might find a surgeon who will cut my auditory nerve?

No one I know of.

Would you induce coma or give ECT as a possible treatment?

Given the prevalence of tinnitus and the huge numbers of people who have been in comas or had ECT, I think we would know by now whether tinnitus was effectively treated by either of these methods.

 

[Daniel Lion]

P.S I think all ENT surgeons should be able to council patients properly regarding tinnitus, even if it is not their area of special interest. It is too common a condition not to, and we are the first port of call for patients.

Hi brownbear, Daniel here.

I hope you're doing well and not suffering too bad.

Now my question. I wrote Stefan Heller at Stanford university about PRP injections, he said there's absolutely no scientific foundation for this procedure.

What do you think? By the way, my ENT screwed me hard, but there's no such thing as medical negligence in SE Asia. Just curious of your opinion. If you don't want to share, that's cool too. I totally respect and understand.

Take care bear, PS, you look like like a big bear too.

 

[JohnFox]

Doc can you tell me where I might find a surgeon who will cut my auditory nerve?

I recently read somewhere where this was tried. The auditory nerve was severed, and it did nothing to alleviate the Tinnitus. Further evidence that the actual Tinnitus is not a ear problem, but a brain problem, brought on by an assortment of types of hearing loss.

 

[PaulBe]

https://www.piac.asn.au/legal-help/public-interest-cases/deep-sleep-tragedy/

There are issues.....

 

[Jr_time]

How are you doing now? Do you think you have habituated? I'm new with t, three months now.

 

[brownbear]

Sorry not to be responding at the moment. I am in the throws of antidepressant withdrawal and it's not pretty.....
Not sure when I will be back on the forum. Best wishes to all.

 

[Holly1987]

It took me several months to bring myself to read a book, but if you can, "When breath becomes air" helped me a lot. The author was a surgeon, about my age, who was diagnosed with terminal cancer. Made me realize that if other people can face much more aggressive conditions, I could live with T. Here's a link to a short article he wrote before the book:

http://stanmed.stanford.edu/2015spring/before-i-go.html

Hey Zug

I read this comment ages and purchased the book. Just finished it and wow what an amazing book.

10/10 Highly recommend.

 

[PeteJ]

Is the OP answering or willing to try to answer medical questions?

I am wondering what to do about pain and discomfort in my left ear that changes in severity. I am wondering what the possibilities are or potential reasons or sources.

If t is both the ears and the brain, don't we need a cross section of specialists including neurologists?

 

[GregCA]

If t is both the ears and the brain, don't we need a cross section of specialists including neurologists?

They exist and are called neurotologists.

 

[Jack Straw]

They exist and are called neurotologists.

I went to one of those and they were pretty useless.

"Learn to live with it"

My favorite line from them: "Go to concerts with ear plugs and if your tinnitus gets worse come back and we can reevaluate"

My response was: "Do you really think I would risk this getting even worse?"

They basically thought that my tinnitus can't be that bad and it must be my anxiety making it worse....

Safe to say I never went back to that "specialist".

My ENT knew more about tinnitus than the neurotologist surprisingly.

 

[GregCA]

I went to one of those and they were pretty useless.

Wouldn't you say it's a bit of a hasty generalization to make a statement such as "they are pretty useless" from your experience with one of them?

For a counter-anecdote, the neurotologist I saw was the only one out of over half a dozen doctors who was able to interpret my CT scan correctly and determine that I had otosclerosis. All the ENT doctors had missed it.

I know we all hate it when they say:

"Learn to live with it"

...but we also know that it's the unfortunate truth (unless your T is from a fixable condition, which yours isn't given the current state of the art - according to your profile info). I'm not sure what your expectation was going in. What outcome would have made you switch from a "useless" assessment to a "useful" one?

 

[Jack Straw]

Wouldn't you say it's a bit of a hasty generalization to make a statement such as "they are pretty useless" from your experience with one of them?

For a counter-anecdote, the neurotologist I saw was the only one out of over half a dozen doctors who was able to interpret my CT scan correctly and determine that I had otosclerosis. All the ENT doctors had missed it.

I know we all hate it when they say:


...but we also know that it's the unfortunate truth (unless your T is from a fixable condition, which yours isn't given the current state of the art - according to your profile info). I'm not sure what your expectation was going in. What outcome would have made you switch from a "useless" assessment to a "useful" one?

I wasn't generalizing I was just expressing my experience.

I understand they all aren't like that, but it didn't encourage me to see another one.

Also, the "learn to live with it" it a terrible thing to say to someone who is in the mists of panic and fear of tinnitus because it is dismissive and callous. To me it equates to "get over it."

 

[GregCA]

I wasn't generalizing I was just expressing my experience.

The generalization is expressed here:

I went to one of those and they were pretty useless.

Perhaps what you meant to write is "he was pretty useless"? (rather than "they")

I understand they all aren't like that, but it didn't encourage me to see another one.

This is indeed a bad side effect of "first impressions", and I also had the same initial contact... and second, third, fourth... etc... until I finally reached out of (health) network after half a dozen doctors were dancing around, to find a guy who knew what he was talking about. I understand it requires persistence, but nobody else is going to fight your fight for you. Don't give up on first try!

Also, the "learn to live with it" it a terrible thing to say to someone who is in the mists of panic and fear of tinnitus because it is dismissive and callous. To me it equates to "get over it."

Agreed. It's a poor choice of words, and omits a certain amount of information that can give hope to the patients, such as advancements in science (bimodal stimulation, hair cell regrowing endeavors, etc).

 

[Zug]

Hey Zug

I read this comment ages and purchased the book. Just finished it and wow what an amazing book.

10/10 Highly recommend.

I'm glad you liked it!

 

[PeteJ]

My left ear crackles and I have pain. My guess is it's from wearing muffs that are uncomfortable. Are these symptoms that sound minor - I mean, can I expect to heal? I am scared.

I wore ear plugs and they irritated my canals. So, I don't know what to do

I can't believe I am in this situation. But, I want to do whatever is needed so my ear heals but I am scared although it takes time?

Please comment? I am begging. :-(

 

[Nick M]

I went to one of those and they were pretty useless.

"Learn to live with it"

My favorite line from them: "Go to concerts with ear plugs and if your tinnitus gets worse come back and we can reevaluate"

My response was: "Do you really think I would risk this getting even worse?"

They basically thought that my tinnitus can't be that bad and it must be my anxiety making it worse....

Safe to say I never went back to that "specialist".

My ENT knew more about tinnitus than the neurotologist surprisingly.

When I asked for help from my ENT, he told me he has patients who come in with cancer. In other words, I should be happy that I only have tinnitus and no cancer. I'm now seeing a new ENT...

 

[Chinmoku]

Even ENTs and Otologists suffer from this, I'm so sorry @brownbear . Your case has many similarities with mine. I would like to exchange a quick private message with you but the conversation feature of the forum does not let me do it. I followed you, may I ask you to message me? It might be a bad moment as I read in the forum you are withdrawing from AD (I'm withdrawing from a very difficult drug) but please let me know if we can exchange a message briefly. Thanks in advance

 

[PeteJ]

Is the ENT doctor still here or gone?

 

[brownbear]

Still here, more or less.

 

[Agrajag364]

Still here, more or less.

Thought the shark had got you.

 

[brownbear]

It's hard to say how much I have loved Rage Against The Machine through my life but never got to see them. I REALLY love them. I have horrendous tinnitus.................. and tickets to see them.........

Now that is a dilemma.

 

[GORYLUCK]

It's hard to say how much I have loved Rage Against The Machine through my life but never got to see them. I REALLY love them. I have horrendous tinnitus.................. and tickets to see them.........

Now that is a dilemma.

Well you could still SEEEEE them...........
Sorry...

Fuck it they're so cool to dance to too Dammit!
Hmmm maybe custom earplugs and muffs taped securely to your head so they don't get flung off as you shake your head...
...enough would still get through...

Hope they're still raging against the uncaring machine in their 80s like the Stones so we can go see and hear them with pristine hearing and peaceful skulls armed with Hough Ear pills in our backpocket and back-up appointments on the Monday with the drive-in ENT for a quick jab of FX-322 new improved formula!

 

[Bartoli]

It's hard to say how much I have loved Rage Against The Machine through my life but never got to see them. I REALLY love them. I have horrendous tinnitus.................. and tickets to see them.........

Now that is a dilemma.

I know you know, but I feel obliged: stand in the back and wear earmuffs if you choose to go.

AND NOW YOU DO WHAT WE'VE TOLD YA!