How Can We Get Actual Palliative Care for Tinnitus?

[Contrast]

Two years ago others and I were making the argument that palliative care dominated tinnitus research and nothing else. As it is true that TRT is the dominating therapy being recommended for tinnitus (at least in US). But the problem is I can't really consider TRT palliative care. The way I see it tinnitus and hyperacusis don't really have palliative care as it is just doctors telling people to shut up and learn to live with it and pay for Jastreboff's therapy. So basically all my complaints about palliative care being a problem are nonsensical ramble from a past more immature me.

If we really want to help tinnitus, noxacusis and hyperacusis sufferers we might want to consider advocating for actual palliative care to improve quality of life. As in current times doctors are just rushing people out of the office and disability claims are being denied again and again.

Any ideas how palliative care could be made efficient?

 

[PeteJ]

Palliative care, at least in Canada, is more associated with terminal conditions and is part of "end-of-life' health conditions. Even if you could demonstrate a link or high possibility of suicide with people who have severe cases of tinnitus, the medical community worldwide will never connect tinnitus with palliative care.

Will never happen.

When doctors and ENTs just hurry you through and downplay the significance and none of them even consider you disabled, there's no chance for designation of palliative care.

 

[Stacken77]

I agree with @PeteJ. I don't think you can get palliative care for ear problems anywhere, which is very sad.

I know an extreme case here in Sweden with noxacusis of the most severe degree and severely loud tinnitus that just gets louder permanently from a whisper. Been denied palliative care, and denied to be temporarily put to sleep.

I think it's insane how the medical establishment won't do anything in cases like that, since it's just perpetual torture.

 

[Contrast]

Yeah, PeteJ makes a good point. I still hold the view I did several years back regarding the establishment being reckless on spending and governments only looking at this as an economic problem instead of acknowledging people are suffering.

The people who control the budgets and grants will always choose the cheapest and safest options. Palliative care is too expensive for them. Jastreboffians who hold opposing views will be showered in grant money while we suffer.

When doctors and ENTs just hurry you through and downplay the significance and none of them even consider you disabled, there's no chance for designation of palliative care.

They are given lectures on how to do this. Lol.

 

[PeteJ]

Ear problems, especially tinnitus, hyperacusis and noxacusis, are the most neglected health problems from what I can tell.

The neglect and indifference shows a callousness and cruelty that I wasn't aware of until I went through it and read about other people's experiences here.

These physicians and specialists get paid a lot of money to do nothing and display indifference.

It opened my eyes with respect to people in the medical field. It was shocking to learn that they're just as callous as lawyers and politicians.

 

[Contrast]

We might as well use the term rehabilitationist care to refer to TRT. As it clearly is not palliative.

 

[catchthebus]

I agree with @PeteJ. I don't think you can get palliative care for ear problems anywhere, which is very sad.

I know an extreme case here in Sweden with noxacusis of the most severe degree and severely loud tinnitus that just gets louder permanently from a whisper. Been denied palliative care, and denied to be temporarily put to sleep.

I think it's insane how the medical establishment won't do anything in cases like that, since it's just perpetual torture.

That's horrible

 

[catchthebus]

Ear problems, especially tinnitus, hyperacusis and noxacusis, are the most neglected health problems from what I can tell.

The neglect and indifference shows a callousness and cruelty that I wasn't aware of until I went through it and read about other people's experiences here.

These physicians and specialists get paid a lot of money to do nothing and display indifference.

It opened my eyes with respect to people in the medical field. It was shocking to learn that they're just as callous as lawyers and politicians.

It goes to show that just having head knowledge about a subject versus having to forcefully live and breath that very subject as a part of your everyday every-moment waking existence are completely two separate things. When you don't know what it's like to really suffer from an ailment, it's easy to brush the idea off as not important. I saw a video from a GP who developed tinnitus and admitted how callously and cold she had treated her patients in the past (telling them to chill out and simply learn to live with it) who came in panicked and scared from their tinnitus. She apologized sincerely in the video, finally realizing what inescapable life-altering agony tinnitus can inflict on people.

 

[PeteJ]

It goes to show that just having head knowledge about a subject versus having to forcefully live and breath that very subject as a part of your everyday every-moment waking existence are completely two separate things. When you don't know what it's like to really suffer from an ailment, it's easy to brush the idea off as not important. I saw a video from a GP who developed tinnitus and admitted how callously and cold she had treated her patients in the past (telling them to chill out and simply learn to live with it) who came in panicked and scared from their tinnitus. She apologized sincerely in the video, finally realizing what inescapable life-altering agony tinnitus can inflict on people.

People who have tinnitus know that most doctors are callous, heartless people. The only way doctors will realize how bad tinnitus is, is if they get extreme cases of it, themselves.

Unfortunately, that won't happen often enough.

 

[Contrast]

People who have tinnitus know that most doctors are callous, heartless people. The only way doctors will realize how bad tinnitus is, is if they get extreme cases of it, themselves.

Unfortunately, that won't happen often enough.

It is hard to self reflect beyond personal bias, but they likely are not heartless. There is just nothing they can do.

 

[Contrast]

You guys have to remember doctors don't view tinnitus and hyperacusis's as a personal life altering condition. They just get briefed on topics in med school or lectures and give it no second thought. They are unaware of how serious these problems can get. Though it is emotionally distressing from our perspective; getting mad at them for doing this is pointless.

making memes about personal problems is fun though.

 

[PeteJ]

It is hard to self reflect beyond personal bias, but they likely are not heartless. There is just nothing they can do.

I have experience with doctors from my own medical issues and my parents' plus what I see elsewhere and I have no reservations totally disagreeing with your take.

EDIT:

Why don't you reply? You obviously have no experience with doctors.

My parents are both dead and I can tell you that doctors are heartless, callous assholes, most of them.

Also, most are implementing conditions to your care - if you are not vaccinated, they won't provide you any care whatsoever.

So, Contrast, if you don't know what you're talking about, don't make excuses for them. Wait until you have to deal with them, personally.

 

[MartinBC]

Hello there, I don't know very much about the topic, but one thing I was thinking the other day is: Why do ENTs choose to become ENTs?

I mean, if you're into neurology and the ear you'll probably try to become an audiologist. But the first doctor you go to when you have tinnitus is an ENT. I really believe this may be part of the problem, if the doctor you go to when you get tinnitus is not interested in the hassle that trying to diagnose the cause will be, there will never be enough information available to do research on.