Questions on ENT diagnosis

Michman49

Michman49

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Hi. I been on this site for awhile and have learned a lot and enjoyed it. I haven't posted much in a long while but I have a couple of questions that maybe some of you might help with which concerns diagnosis from ear doctors.
A little background on me first. I was born deaf in my right ear. I had no problems hearing in my left till 20 years ago when it started fluctuating and ringing making it very hard to hear at times. These episodes went for a few days here and there and everything would be normal. The longest time was 8 weeks about 7 years ago until last year when my hearing level dropped one day to moderately severe to severe and been that way since, although it just dropped some more. I wear a hearing aid but getting to point where it not helping much.
I been to many ENT's over the years and tried all sorts of things to remedy it. The thing is pretty much every one had a different diagnosis for me. One thought it was from allergies, another thought autoimmune, then one thought hydrops and last one just progressive hearing loss.
After hopefully reading all that my question is has anyone gotten a diagnosis they were satisfied with? The diagnosis these doctors came up with seems mainly clinical and guess work. Also are there accurate tests to determine this stuff? I've found these doctors do not make efforts to do anything more and I haven't seen any that give definitive answers
Anyways thanks for reading and any insight would be appreciated.
 
I'm in the same boat. Doctors haven't seemed to care to diagnose a cause and I've seen a similar list to your's, with the addition of Meniere's. They did do an MRI to rule out a potential tumor (since one side is significantly worse than the other for me, this was a concern). That came back normal, so they went on to tell me how to cope, manage the environment, and then sent me on my way.

For the most part, they seem uninterested in a cause, and really, I guess it doesn't matter. There's nothing they can do to treat those causes really, so it's just managing the symptoms. This isn't really my preferred approach to medicine, but eh...

I've just shrugged it all off for the time being and I'm moving on.
 
I some time feel like the elephant with the blind men trying to guess what it's after going to a few doctors . They all have a different diagnosis to why I keep getting earaches . I wish I had an answer for you.








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Thanks for the replies. It sounds like most ear doctors are the same. Although I got different answers from doctors everyone agreed that nothing can be done for me. It's use a hearing aid till you can't hear with it anymore and if I go completely deaf look into a CI. Not much options. My family keeps wanting me to keep trying new doctors and hopefully someone will come up with something. I try to tell them it's not much use. All I'd be doing is spending time and money to hear same stuff over again. It's just something I got to live with
 
Michman49 said:
Thanks for the replies. It sounds like most ear doctors are the same. Although I got different answers from doctors everyone agreed that nothing can be done for me. It's use a hearing aid till you can't hear with it anymore and if I go completely deaf look into a CI. Not much options. My family keeps wanting me to keep trying new doctors and hopefully someone will come up with something. I try to tell them it's not much use. All I'd be doing is spending time and money to hear same stuff over again. It's just something I got to live with
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My family had the same initial response. I'm convinced there is nothing that can be done really, and doctors and stories here and from other people seem to confirm it.

Since then, my wife and I are learning ASL (we find it fun to learn, and it's already being useful in certain environments). I don't honestly expect my extended family to learn ASL or anything even if my hearing diminishes further and it becomes my preferred language. But it's awesome that my wife is supportive and she's really starting to understand the challenges we are, have, and will face in communicating. I've also learned to be a bit more careful when "not hearing" things if I actually heard them. It drives her nuts when I say I didn't hear something but later figures out that I did (I'm not a great liar, my grin gives it away).
 
That's good to see the support there. I'm about to start asl classes and my mom wants to come along to learn as well. I have a small family and they all said they would learn it as well. My hearing had been dropping and it's to the point where I can only hear within close range.
I haven't gotten accused on hearing something that I've said I didn't yet. lol. My problem is people talk to fast and I don't catch everything anyway and have to ask them to repeat themselves. My family still forgets I can't hear much and talk while walking away or behind me. It's a losing battle.
 
Mine was pretty easy to diagnose, and confirmed with MRI and Ctscans. My diagnosis won't give you any insights, anything that's easy to diagnose won't be probably. I think sometimes they just don't know because there's no clear cause.
 
I think that is pretty much it with mine as there is no clear cause and they just don't know. I've had MRI and cat scans and many other tests but nothing to show for any of them. One doctor told me the only way to possibly know is to do an autopsy. I said I'd pass on that
 
I know it`s tough and it`s not just hearing doctors that do that. My wife has been battling with autoimmune disease for years. It took almost 8 years for her to find a doctor to treat her. Many said it was just stress. Many said it was just her body changed after having a baby. Many said she needs more exercise. Turns out she has Sarcoidosis (which is what Bernie Mac had), and Rheumatoid arthritis. If you really want to know keep trying doctors and maybe the right one will come along. I hope so. Doctors are just like police officers, teachers and even restaurant waiters. You will get some great ones that will do a terrific job, but you will also come across alot that leaves you wondering how the even have that job. Remember just because they are a doctor doesn`t mean they are a good doctor.
 
That's very true about doctors. It's tough to find a good one. I've found audiologists to be a lot more accessible and concerning more then the doctors I been to. I've been to enough doctors to know they all at least acknowledged nothing can be done. Maybe someone working on something and I try to stay informed
 
Michman49 said:
That's very true about doctors. It's tough to find a good one. I've found audiologists to be a lot more accessible and concerning more then the doctors I been to. I've been to enough doctors to know they all at least acknowledged nothing can be done. Maybe someone working on something and I try to stay informed
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I live in a small city and it's very hard to find a good doctor . We have an ENT doctor that bedside manners is horrible ! 2 audis had moved out his office . One audi rented the first office he could find yet to get away from the doctor. I called the other ENT doctor for my earaches and was just going to throw some pills at me if I went to see him.
 
I have always thought ENT's use a dart board approach to diagnosing their patients when it comes to hearing loss, They basically throw a dart at the hearing loss dart board and where the dart hits, that's the diagnosis they give you! Hopefully they are better at noses and throats, but having never gone to one for either of those, I don't know.
 
A doctor more knowledgeable in diseases of the ear, balance, hearing loss and other problems of the head and neck would be an otologist. I have found, like the rest of you, that an ENT is useless when it comes to ear problems.
 
Annie09Z said:
A doctor more knowledgeable in diseases of the ear, balance, hearing loss and other problems of the head and neck would be an otologist. I have found, like the rest of you, that an ENT is useless when it comes to ear problems.
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The last doctor I saw for my earaches was an Otologist & Neurotologist , the first time I saw him for my earaches he wanted me to have
a hearing test and I tried to tell that would hurt my ear more. The woman gave me the hearing was in training and was left on her own ! I was trying to tell all the beeping was really painful and the fool had forgotten to turn on the volume so she could hear me. I wish I had stopped the test on my own. The doctor told me there was nothing he could do for me but he wanted me come up for a follow up ! I was like WT? ! I called him back a year later and he said he could keep meds for my earaches . HUH ? He didn't say that the first time. I never when back to him. He has an average rating GEE I wonder why?
 
I'm still looking for an audiologist that can help me. I went to an ENT because my hearing hasnt been great this past year and it's getting worse and worse(I hear fine but dont understand words). He said it was some sort of processing disorder(literally, 'some sort'), told me to "try to focus more"(literally his exact words) and sent me on my way.
 
:wave:Ren. there is a thing labeled CAPD - Central Auditory Processing Disorder - that most doctors and many audiologists - don't know anything about, have never heard of. It requires testing by an audiologist familiar with testing CAPD in ADULTS, not just kids. Growing up in the 70's/80's, "authorities" just didn't know about it. More and more people do now, but still very unknown to most.

I may have this as well - was tested and diagnosed with learning disability about age 20 but at the time didn't know about CAPD or APD and so didn't push to investigate.

CAPD is a brain-based processing information disorder, somewhat related to and often occurring with - learning disabilities or ADD/ADHD. A person can have only CAPD also. The person's brain can make the connection with a sound, allowing the individual to hear it, but the brain doesn't actually decode the message accurately, or at all. There are different kinds of subtypes of it.

A person can also be hoh and have CAPD. I'm hoh.
If it's actually CAPD, trying to "focus more" isn't going to help. You're essentially being blamed for something that's going on in your brain.
That's why diagnosis by an audi who's VERY familiar with CAPD, is necessary, if you're concerned and want to find out anything more.

Some info. about it will say that CAPD means that there isn't a hearing "loss" or refer to a "person with 'normal hearing' " which is inaccurate, as I referred to earlier.
This is a link about it if you're interested: http://www.ldonline.org/article/5919/
 
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