Help. I'm in a Horrible Horrible Place.

[Bill Bauer]

Have you contacted them to see if you somehow fell through the cracks?

At this point, I doubt an ENT can help me...

 

[GregCA]

At this point, I doubt an ENT can help me...

So that means the answer is no, right?
Look, this is going to sound like tough love, and I feel bad for roughing you up a bit, but you've been promised an appointment back in March, we're almost mid July, and they haven't called you, and you've just let the time go by without doing anything about it.
Just how important is this appointment to you?
I don't know if there are many good ways to say this, but you really need to drive your health. Be active, not a passive participant. You can't be hands off and expect that others are going to take care of you.
Sorry man, but you need to hear this. I hope it'll give you the push you need - I really want you to get better.
Good luck.

 

[Michael Leigh]

They tell us that it is permanent,

I have had tinnitus for 21 years and no doctor has ever told me tinnitus is permanent. Furthermore, as I've always said. ENT doctors know about the anatomy of the ear and are able to treat it medically or surgically. However, the majority of them know very little about tinnitus because they have never experienced it. It is the Hearing Therapists and Audiologists who are trained in the management and treatment of tinnitus who are the professionals, as it calls for a different set of skills that most ENT doctors don't have. You will find most Hearing Therapists and Audiologists that work with tinnitus patients, were either born with tinnitus or acquired it at some time in their life.

Michael

 

[PaulBe]

So I went to a second ENT. He was great. Very thorough, spent 90 minutes with me and made sure to answer all of my questions as best he could and promised to look into anything he did not know. He even called me at home the next day to give me more information, and called two other times to offer more info and check in on me. I asked him about injections. He did not do them, but he agreed they were worth trying and referred me to an ENT specialist who could.

Not even a week later, I was able to see that specialist. He was amazing, definitely an expert in his field and he specializes in ear conditions. He sees patients with both hearing loss and tinnitus nearly every day.

So I'm glad that I pushed. I think the first doctor was okay, but just not as knowledgeable as the other two ENTs.

You got very good care. This is how its meant to work at ENT level. This is how it SHOULD happen.

 

[PaulBe]

as it calls for a different set of skills that most ENT doctors don't have.

Trouble is that too many of them don't even know what it is they don't have.

 

[Bill Bauer]

I don't know if there are many good ways to say this, but you really need to drive your health. Be active, not a passive participant. You can't be hands off and expect that others are going to take care of you.

I learned that in the future, one ought to get medical textbooks at a university library and get to know everything there is to know about one's condition. Then one is to spend days reading the latest medical studies (Pubmed and Scholar.Google.com) on one's medical condition. Once you know exactly what you want your doctor to do for you (what prescription to ask for, etc.), you are ready to see your doctor. The reason for this is that unless you have one of the dozen most common conditions, the doctor will not know much about your condition. The doctor is NOT going to spend hours investigating the pros and cons of the various treatments. It is up to you (and your family) to invest your energy and time into it - then you have a chance of having the medical system work well for you.

I know that there is absolutely nothing an ENT can do to treat my T. rTMS is a possible treatment, but no doctor will want to prescribe an off-label treatment like that, or the doctor might get sued by you. I am not interested in any psychology-based therapy.

 

[TuneOut]

Pubmed and Scholar.Google.

Bill, another good option is Sci-Hub.

http://sci-hub.io

"Sci-Hub
– the first pirate website in the world to provide mass and public access to tens of millions of research papers. A research paper is a special publication written by scientists to be read by other researchers. Papers are primary sources neccessary for research – for example, they contain detailed description of new results and experiments.

Public distribution of research papers is artificially restrained by copyright laws. To confront this, the Sci-Hub service, starting from 5 September 2011, opens any paper for free reading, effectively bypassing any restrictions or paywalls.

By this time we have collected more than 58 million research papers on our library, and it's growing. Articles are free to read for any visitor.

Our mission is to remove any barrier which is impeding the widest possible distribution of knowledge in human society!
"

Pubmed can also be accessed through Sci-Hub. When you click on the link to the full text, it will auto-download the paper, bypassing the journal site.

http://www.ncbi.nlm.nih.gov.ololo.sci-hub.io/m/pubmed/

 

[Bill Bauer]

Bill, another good option is Sci-Hub.

http://sci-hub.io

I have never heard of it before. Thank you, this is very helpful!

 

[GregCA]

The doctor is NOT going to spend hours investigating the pros and cons of the various treatments. It is up to you (and your family) to invest your energy and time into it - then you have a chance of having the medical system work well for you.

If you have an esoteric condition like T, I think you are correct here. You need to invest a lot of time and energy into it. It sucks, but the alternative isn't any better.

I know that there is absolutely nothing an ENT can do to treat my T.

You are probably right, but then I'm not sure why you've wanted an appointment with one (it was supposed to be scheduled in March this year).

rTMS is a possible treatment, but no doctor will want to prescribe an off-label treatment like that, or the doctor might get sued by you.

Doctors have all kinds of waivers for you to sign where you will sign away your rights to sue if things don't go the way you want them to go. It's very standard in medical care, especially for experimental & off label treatments.
My HMO has an arbitration clause, which caused me a lot of grief. No way to sue.
If you really want it, I think you can make it happen (provided you have the money).

I am not interested in any psychology-based therapy.

How about sound therapy? Not to mask the T, but to reduce the physiological symptoms. These treatments can be a pain in the ass to comply to, but they do work for some people (by "they work" I mean that they showed a reduction in T volume in studies you can find on pubmed, not that they habituate you to your current T).

 

[Bill Bauer]

How about sound therapy? Not to mask the T, but to reduce the physiological symptoms. These treatments can be a pain in the ass to comply to, but they do work for some people (by "they work" I mean that they showed a reduction in T volume in studies you can find on pubmed, not that they habituate you to your current T).

Do they work only if your T is at a constant frequency?

 

[GregCA]

Do they work only if your T is at a constant frequency?

I don't know. The studies are targeted to people with tonal T, and for some of the therapies, the additional requirement is to be below 8 kHz.
If you have narrowband T, I'd still give it a try, even though there isn't any study that covers that.
I don't have tonal T, but I'm still giving it a try, in spite of my hearing loss too.