You Guys Were Right. Most ENTs Are a Waste of Time.

Charlie396

Member
Author
Dec 17, 2015
76
California
Tinnitus Since
12/2015
Waited over a month for nothing. Didn't even get a hearing test, that comes in over a week. Just a 'what seems to be the problem?' meeting that took less than 5 minutes.

All I learned:

- Probably too late for any kind of prednisone, which was my only hope.

-suggested hearing aids or masking devices.

-claimed it 'just goes away' in most cases 2 minutes after heavily implying it's probably permanent.


God damn it.
 
Im sorry to hear your appointment did not go well.
It's so sad to hear this when we build up our hopes up for help and reasurance.
Hope your hearing test goes well and you get to then see audiology...lots of love glynis
 
Yes I wrote a thread on here yesterday, was called up to the so called ENT specialist to be told they don't have the results of my hearing test, can't do anything for my insomnia and gave my a website so I can do exercises! I've done more for myself by reading books that people recommend from this site, and the support from people like Glynis, billie and some oth r angels who have helped me and I see giving comfort and advice everyday, I know it's not advisable to visit this forum for everyday but it lifts my spirits to see people going out of their way to give help to others, hope u don't let it get to u, I had great pleasure muttering under my breath as I left it he specially F**k u!!!! Lol from one of the books recommended on here call d F**k it, on kindle. Hugs x
 
@Charlie396
You can still apply to the AM-101 trial in Southern California. That is a better shot that predinosome. ENTs are basically useless, one can get better advice from audiologists. In a few locations one can find tinnitus clinics with a coordinated team of audiologist, psychologist and ENT. Still the crude reality is that tinnitus can not be cured, and one is depending on mostly the body healing itself. In most cases, the healing does not happen because neurological issues are really complex, and the most common success story is not that the tinnitus disappears. The tinnitus will always be there, and somehow one learns to ignore it. I am not a success story.
 
@Charlie396
You can still apply to the AM-101 trial in Southern California. That is a better shot that predinosome. ENTs are basically useless, one can get better advice from audiologists. In a few locations one can find tinnitus clinics with a coordinated team of audiologist, psychologist and ENT. Still the crude reality is that tinnitus can not be cured, and one is depending on mostly the body healing itself. In most cases, the healing does not happen because neurological issues are really complex, and the most common success story is not that the tinnitus disappears. The tinnitus will always be there, and somehow one learns to ignore it. I am not a success story.

I hear ya man. I was hesitant trying to go the AM 101 route because of the really scary side effects some of the guys in the participants thread are having. It was supposed to be a last resort option if there was no hope after a month, pretty much got my answer today.
 
Hope works great only in songs and the movies I'm finding out.

The ent's response to asking whether or not things like movie theaters or shows was ok was "movies should be ok with earplugs, as for the other stuff, just watch it on YouTube"
 
I hear ya man. I was hesitant trying to go the AM 101 route because of the really scary side effects some of the guys in the participants thread are having. It was supposed to be a last resort option if there was no hope after a month, pretty much got my answer today.

I strongly recommend you at least go to the screening of the AM-101. You can ask all your questions to the clinical staff there and decide if you want to proceed from there. The sooner the better.

Don't take advice from these forums regarding AM-101 instead of the staff. There are virtually no long lasting side effects from the procedure.
 
I have to disagree. In most cases, the first couple visits to your primary ENT for tinnitus are not "worthless." Remember, your ENT cannot "cure" tinnitus. Nobody can. The primary ENTs job is to weed out obvious (and sometimes fixable) causes of T, like ear wax buildup, infections, etc. The ENT also give you (or order) at least a basic hearing test and brain scans such as an MRI, to check for hearing loss, tumors, neuromas.

If all that comes back A-OK and you still have tinnitus: You then might want to find more sophisticated medical specialists and treatments, as suggested by @InfiniteLoop. Be aware it can be a long, expensive and sometimes (but not always) fruitless search for better management techniques.

For starters, you should get a more sophisticated hearing test that goes above the 8,000 hz used in most primary ENT offices. If you are having trouble with severe anxiety or depression because of your tinnitus, seek help from a mental health professional -- preferably a psychiatrist, if you need short-term medication relief for very severe symptoms, or a therapist if you need better coping techniques.

I would say part of what tripped up @Charlie396 is that he had to wait a month for that first visit. If at all possible: You need to get in for a primary ENT visit ASAP if your tinnitus has been hanging around for more than a day or two -- or immediately if you know it was caused by trauma or noise exposure. I was in my ENT's office the day after my pressure injury occurred. Some treatments, like steroid injections, have a very small window of opportunity. I recognize that not everyone has quick access to a healthcare professional. But if you can, make a lot of phone calls, say its an emergency, and demand to be seen.

And of course, even being able to see an ENT immediately didn't "save" me. More than two years and $14,000 later, I still have tinnitus. But I discovered good ways to manage it and, today, am able to live pretty much as I did before.
 
I hear ya man. I was hesitant trying to go the AM 101 route because of the really scary side effects some of the guys in the participants thread are having. It was supposed to be a last resort option if there was no hope after a month, pretty much got my answer today.

Go for the trial, in the short term this is our only chance for a relief. Your onset is fairly new and if you can act fast, even though you have the placebo in the 1st round you'll have the real drug not too late.

There is no permanent side affects reported. I too had my first round on injections and i'm slowly going back to my baseline after the T spike.
 
To be fair, ENT's are not tinnitus specialists, far from it.
They are surgeons that focus on physical problems within the ear.

When I went to ENT 2012 I got help, she gave me an MRI, she checked with camera in my nose etc and everything she could do, hearing tests etc. She then refered me to a Hearingcenter that focus more on hearing problems and Tinnitus.

I guess she was nicer then others though since she herself have T, but yeah I heard the same "It could go away in 6 months" etc.

If I knew about predistone then I would have pushed that, but since my was not from an immediate acoustic trauma I dont know if I would been able to get it. Anyway that is to late now anyway.

I also been going to my ENT since my spike 3 times, and yeah it comes back clean no problems every time. So that sucks, but I guess it really is fine in my ears.
 
The primary ENTs job is to weed out obvious (and sometimes fixable) causes of T, like ear wax buildup, infections
But they don't even do that most of the time, and these are things a Practice Nurse can readily identify, so there is no expensive specialist skill involved there, even though that's what they charge for. There are also precious few ENTs that bother to develop further contacts to refer us on to as well such as advanced Audiology or Otoneurology. They are for the most part lazy practitioners because they will be paid regardless.
 
Go for the trial, in the short term this is our only chance for a relief. Your onset is fairly new and if you can act fast, even though you have the placebo in the 1st round you'll have the real drug not too late.

There is no permanent side affects reported. I too had my first round on injections and i'm slowly going back to my baseline after the T spike.

It was actually reading your temporary side effects that kinda scared me man. But I think it's now worth at least trying to get into the screening process. You're at the clinic in Santa Monica right? Would it be faster to call them directly to try to get in?
 
I've been to several ENTs especially when I first got tinnitus. The first one spent 10 minutes with me discussing only the worst possible cases to freak me out on purpose and then proceeded to blatantly flirt with and hit on me. It was so inappropriate and I felt so disgusted. I had to find and call the person in charge of him the next day and report it.

The second ENT barely looked at me and said, "Maybe it's indigestion. Take some Tums."

A trend that I'm finding with most doctors (not just ENTs) that I go to in California is that an office visit lasts 5-10 minutes now. Maybe even less. The doctor wants you in and out as soon as possible with any diagnosis they can come up with and as much medication as they can get you to take.
 
It was actually reading your temporary side effects that kinda scared me man. But I think it's now worth at least trying to get into the screening process. You're at the clinic in Santa Monica right? Would it be faster to call them directly to try to get in?

Weeks of suffering (temporary) is worth of the change of a permanent decrease in T. I still have some issues but they'll fade away, there is no reason not to.

Yes i was in Santa Monica site and it's better to call them directly to expedite the process.
 
Weeks of suffering (temporary) is worth of the change of a permanent decrease in T. I still have some issues but they'll fade away, there is no reason not to.

Yes i was in Santa Monica site and it's better to call them directly to expedite the process.


Thanks man, I will. I can't seem to find a direct number. I only found a number from Googling the office address, would (310) 586-0843 be the good number to call?
 
Yes, this is the number. Request Sara Richards who is the coordinator for the trial.

By the way, you seem to be in California. I'm in Seattle and flew there 4 times already for the injections and follow up visits, which has opened a big hole in my budget. But still i'll do what needs to be done.
 
@Charlie396
You can still apply to the AM-101 trial in Southern California. That is a better shot that predinosome. ENTs are basically useless, one can get better advice from audiologists. In a few locations one can find tinnitus clinics with a coordinated team of audiologist, psychologist and ENT. Still the crude reality is that tinnitus can not be cured, and one is depending on mostly the body healing itself. In most cases, the healing does not happen because neurological issues are really complex, and the most common success story is not that the tinnitus disappears. The tinnitus will always be there, and somehow one learns to ignore it. I am not a success story.
Our best hope for an actual tinnitus cure is using Stem Cells to differentiate into afferent and efferent nerves in the inner ear. If all goes right, they could be prompted to become neurons and reestablish the broken connections between the hair cells and the brain. The broken connection is a good reason why we hear that ringing noise in our ears since the brain can't pick up the noise that it was once able to process therefore creating its own noise to make up for the loss. The brain and its nerves plays just as much of an importance as the actual inner ear does itself in hearing. That reforming of a connection between the brain stem/auditory cortex to the hair cells themselves is very crucial, I'd say, to set the brain back to how our hearing was before the tinnitus issue.
 
Our best hope for an actual tinnitus cure is using Stem Cells to differentiate into afferent and efferent nerves in the inner ear. If all goes right, they could be prompted to become neurons and reestablish the broken connections between the hair cells and the brain. The broken connection is a good reason why we hear that ringing noise in our ears since the brain can't pick up the noise that it was once able to process therefore creating its own noise to make up for the loss. The brain and its nerves plays just as much of an importance as the actual inner ear does itself in hearing. That reforming of a connection between the brain stem/auditory cortex to the hair cells themselves is very crucial, I'd say, to set the brain back to how our hearing was before the tinnitus issue.

If this can't be achieved I would happily settle for a way to numb the part of the brain that is generating the tinnitus noise. I wouldn't get perfect hearing back but I also wouldn't have this horrible screeching sound in my head. It's a trade off but at my current level of hearing ability I would take the deal in a heartbeat.
 
I totally agree that they are a waste of space. When my T first started, it was screaming so loudly, I didn't sleep for days, until eventually I passed out with exhaustion. Even though it was not noise induced and I had ear popping, crackling and an ear filling up with liquid, all I got was a really useless hearing test that proved nothing and a suggestion that I pop a radio on quietly in the background. He also tried to put me on anti-depressants to help my mood - thanks!!!
 

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