1 Year Change — Still Nobody Thinks Anything Is Wrong?!

So, here are my audiograms from June 2017 and July 2016, approximately 1 year's worth of changes. As I suspected I have lost a sizeable portion of my hearing in the low frequencies, and some as well in the higher frequencies. 6kHz was not tested, but I have a good feeling the notch found there has worsened in both ears as well.

July 2016:



June 2017:




I also recently went to a (stupid?) physical therapist, who supposedly specialized in hearing disorders and treating them. I had a number of serious problems with her, for one because she treated me like a dumb slobbering animal (she likely picked up on the autism and so treated me like a (insert r word here)), and didn't ask permission before touching me or asking sensitive questions. I had a PTSD attack because of her, had a bad migraine that ate more of my hearing and balance, all due to her inability to leave me alone and not do X like I asked.

She also came to incredibly questionable conclusions as to the status of my inner ear health.
She claimed that my ears had totally healed after the firecracker incident a few years ago and that my ears were exceptionally healthy.
She then completely ignored my complaints of pressure, vertigo, extreme pressure sensitivity, low and high tinnitus, and the obvious hearing loss that was on the audiogram. She also ignored every other neurologic problem I complained about, including the proven dysautonomia and likely cervical spine problems.
I told her sternly that my hearing had been completely within the -10 dB range only 5 years ago, to which she still explained nothing had happened to my inner ears and that it was all in my head.
She blamed everything on an auditory processing disorder or a migraine disrupting my central processing. I do have the former as a complication of autism, but I was aware of the problems it presented me with before and none of those included straight up hearing loss or balance problems.

Here are the things that are troubling me about what she said:

1. No, my ears never healed after that firecracker and the notches were preserved in the right ear, and eventually disintegrated. All of my audiograms up to the present demonstrate this.

2. That hearing within the 'normal' range, even if it's borderline, means my ears are completely healthy and that I don't need help (extremely harmful convention supported by too many ENT practices). Didn't matter that I was fully aware of previous acoustic traumas because they apparently did nothing?

3. There is low frequency hearing loss that has been preserved throughout the past 5 or so audiograms I have done over the last 10 months. That was not there a year ago and never was before, and the loss of all bass in my music further proves that it is not an artifact. The low frequency tinnitus is another worrying sign commonly present in peripheral inner ear problems.

4. That migraine can't directly damage the inner ear and cause something like hydrops. Migraines just cause auditory processing problems (literature disagrees with her statement completely; they can damage the inner ear and even contribute to something like Meniere's disease).

5. That my body is overreactive and that I should do all the things that trigger hearing loss, tinnitus, ear pressure, and vertigo, just to get my body used to things.

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Anyway, thoughts, concerns about this so-called diagnosis? About why my hearing is still going down?

I would like to hear them very much! I'm also thinking of writing a letter of complaint, so any fact hunting and personal stories of similar misdiagnoses would be helpful!

 

Hey Coyote!, i'm sorry you are dealing with this, has anything worked for you in these past month?

 

I'm so sorry that you are still going through this. You know that I have very similar problems and audiograms, so I can relate. Do you have them check your hearing though bone conduction? You should ask them to also check that when you get your hearing tests. That way, you can see if the fluctuations are in your inner or middle ear.

The other piece of advice that I can offer you is to listen to what people say only as far as they are licensed to say it. This physical therapist has no credentials to speak on the workings of your inner ear, save that for an Otologist. That being said, you may want to stick with the physical therapy (maybe just with someone else). I haven't had much in the way of dizziness since I started working on my cervical and shoulder instability, unfortunately I can't say that there has been any improvement in my hearing.

 

@Jkph75

I have had my hearing tested via bone conduction sporadically, but the problem concerns that my head does not like pressure anywhere on it. Seems to set off migraines, and the things for bone conduction clamp tightly against one's head. In the past though, it showed SNHL and not conductive loss.

I'm just not the one to trust licensed professionals all the time without just cause, especially because of all the BS I have dealt with before regarding my hearing and health problems before.
When they blindly ignore my audiograms, follow conventions that are incredibly stupid, and don't understand that CAPD does not manifest as a progressive hearing loss on an audiogram, I can't say that I can trust their viewpoint; this person also seemed to know that I had autism, which can make people jump to biased conclusions at the snap of a finger. This person had just started their practice as well, and seemed to have little experience.

I also already have had CAPD for my entire life, but it never caused outright hearing problems or loss of frequencies. It was mostly getting sounds confused and not being able to unscramble them if presented together in a loud setting.

 

@Mario martz

Not a single thing on God's given earth has worked for me. Most everything I tried just made me sicker or did nothing. The other problem concerns that people don't really know what to do for me, or don't care to figure out a way because I am female and autistic.

 

We care about you, keep us posted.
and dont stop till you find an answear.
why kind of austims do you have? im asking this because a close relative of mine has it to.

btw there are cases of people that after 2 years finally discover whats going on,
pls keep going... im still dealing with trying to find out whats going on, and also... feeling better.
yestarday i want to a doctor and he asked me if i ever consider going to a psychologist... lol
fucking idiots.
but there are good doctors too, so dont give up

 

I completely understand. I have been told that I might have CAPD by audiologists. Apparently you should not be able to detect changes in your hearing as long as it is the normal range, even if you only hear out of one ear. This idea makes no sense at all. In order to suspect CAPD, you would have to have no change in your audiogram but still perceive an inability to hear. Sometimes I just want to tell them that I know they have no idea what they are talking about.

So, what was this person's theory and basis for claiming that she could impact your ear though physical therapy, especially with little experience. I am curious about this.

 

@Coyotesheaven - if I were you, I would probably approach the situation a little differently. It seems to me that you are essentially asking to be "validated" with regards to your thoughts on audiometry. If so, then asking the input from the average doctor "down the block" or "around the corner" is perhaps not the way to go. Consider finding one of the dedicated research centres on auditory disorders and get to see one of the staff with a ph.d in their field. But remember, no matter how many diplomas they have hanging on their office wall, can they do much more than validate your own findings.

Regarding tinnitus and hearing loss, specifically, while these two variables are related, the relationship is not exact. Attached is some of the recent literature on the subject (in relation to specialized insights on tinnitus, audiograms, and hidden hearing loss - and how to test for it). Send it to whomever you end up seeing and have a discussion about your situation. This person could also become someone who follows you for a period of time so that you have a degree of continuity in your follow-up visits. I think that could be useful to you. My suggestion, at least.

Lastly, protect your ears wherever you go.

See also this link:

www.cbsnews.com/news/loud-noise-hearing-loss-hidden-cause

 

@Jkph75

I really don't know what this physical therapist wanted to do with me to supposedly cure me; I'm likely not going back for being treated like a dumb animal. I assume however that it involved sensory integration therapy and specific techniques used in CAPD, or something for migraines.
She claimed it was all a central processing dysfunction but never specified the therapy; I have been through CAPD therapy when I was really young...don't remember much of it but it certainly did nothing to improve my hearing or do anything that would be beneficial to me in the present. Maybe for my hyperacusis, but hell that doesn't matter now because I've lost so much hearing that the hyperacusis is going away. I wear earplugs only because my hearing threshold goes down, and I get dizziness, and ear fullness/burning from all loud noises. It's not a result of the sound scaring me alone.

I also can't trust someone at all handing me a CAPD diagnosis when they see that my ears have gone 10dB down across all frequencies in 1 year, and 30 over the past 5 years, when I am still 23. I mean are people so pathetic in the medical setting these days that they cannot see a simple visual pattern in a simple, relatively definitive test?! 5 year olds are smarter it may seem.

I think that most people would notice a dramatic change in their hearing even if it were in the normal range; a 10dB change is effectively halving the perceived volume if I remember correctly. So, unless someone is really not in tune with their world or their senses, they will notice a change. And we autistic people will notice them much more quickly than most because most of us are very intimate with our senses.
It's also not their place to say that the hearing loss I have had, or that you have had, is too little to be of concern to them even if they admitted what the test blatantly shows.
I am autistic, and this form of sensory deprivation for me will and has led to severe cognitive dysfunction and other forms of sensory handicaps, along with uncontrollable depression and panic disorder. And you have also had to go through a lot of terrible things on your end, which may well all link back to your inner ears.

I really wish there was a way to reform the medical practice through patient's voices alone. Whatever crap they are being fed is doing a terrible disservice to so many of their own patients and so many in the community here. My life is literally in tatters because of my declining hearing and autism, but I have never gotten what seems like appropriate help. Some days I think of holding boycotts and protests because I've had enough of this neglect .

 

@attheedgeofscience

I appreciate your advice and have practically done all of the above; I went to not one but 2 world-renowned experts in Philly before moving back to Utah.
Both believed I was just an anxious woman and needed pills to quiet me down; completely decimated every single symptom I experienced. They never bothered to listen to my symptom history. And that was before I got really sick.

A third expert in inner ear disorders claimed migraines, and while the theory could remain true, that expert did some shady things on his end (i.e. lied about a serious FDA warning for side effects of a drug I was put on and beginning to experience), and basically threw me out of his practice when I complained about what the drug was doing to me. I was not helped in any way by the therapy recommended, and basically got royally messed up from the medications I was on.

There are no reputable experts in Utah, and I am now too disabled and sick to go out of state. I have seen so many neurotologists who all seem to be unable to read audiograms. I'm tired of going to ear doctors...really tired....the vast majority don't understand that what they are saying is gibberish.

 

One day at a time coyote . Physical therapist can only help if something's going on in the neck that causing their ringing in the ears . And I definitely know what's going on with you as far as Sensitivity I have two sons with Asperger's . I have all the same symptoms you are describing but mine loss of hearing was due to the Marine Corps so there's nothing they can do for me . I was young like you when this happen to me . Good luck to you ... CURLY