CAPD terminology (Audi says I'm "hearing impaired.")

[Jazzberry]

Actually, that's a lot of what being Hoh is - hearing fairly well in some situations (quiet, familiar voices etc) and clearly being Hoh in others.

<snip>

From a medical standpoint, the way you perceive sounds/understand voices makes you Hoh & it's completely accurate to call yourself Hoh (in ASL using the standard Hoh "HH" sign ... I wouldn't suggest modifying it as it's likely to confuse more than clarify)

No, because it's an accurate description to say that people with CAPD/APD are hard of hearing (hoh). If you can't function as a "hearing person" in situations where there is background noise, people chatting etc ... that's being Hoh.

In your situation, your specific Hoh "type" is CAPD/APD - versus "conductive", "sensorineural" or "mixed".

<snip>
trying to explain the different variables takes too long for most people and they generally don't care.

Just want to say that I strongly agree with all of the above.

I've been diagnosed as HH and not APD and I know that my ability to hear varies wildly. It depends on how many people are near by, how loudly they are talking, how far away they are, how awake I am, what their voice pitches are, how familiar I am with what happens to be being discussed (with 80% word discrimination in one ear and 64% discrimination in another ear that means that even in the best listening situation I'm doing a lot of guessing), what the acoustic characteristics are of the rooom I'm in, what the humidity is (sound carries better the "wetter" the room or weather is -- I hear better when the shower is running) and many, many more variables.

What I find that upsets most hearing people usually is not being able to predict when and where I can hear. If they can't do that, some of them will begin to distrust me -- that has been my experience anyway. It has also been my experience that they also mistrust most HH with a significant loss that they meet or know, although I'm not always sure that they realize that.

So, what I do with people I like or see a lot is to do my best to explain why my ability to hear varies so much. Then, if I happen to hear them even if they didn't wait to get my attention -- I will probably still respond.

If I think that they are the mistrusting type and will assume the worse of me, I will basically do my best to only respond to them if they say my name first, wait until they have my attention, and are facing me, and are not covering their mouths or eating something, etc. I find that by my attempting to bring more consistancy to the situation, even if sometimes it is not necc., makes it easier for us to work together. I usually use this technique with people I work with and not in social situations. Why would I hang out with people that wouldn't be inclined to trust me or don't have an affinity towards me and can't basically figure me out within a reasonable amount of time? I don't, so I don't usually find the need to use that technique outside of work.

Hope that makes sense.

The most I add is something like - I have learning disability and/or may not hear you well. I may need you to show and model <something> to me instead of tell me.

Based on my past work experiences, if I had an LD or APD I don't think I would not tell most people why I don't hear well, just simply that I don't hear well. If someone was my friend and I have reason to trust them than I would give them more info. The reason is because my experience has not been good with many people that I had worked with and I would not trust them to behave intelligently or maturely. There's no reason to, but some people do make more of an issue over some physical conditions than others. My attitude is that its not my job to educate them and I don't give them any info that they might try to use as ammunition against me because of ignorance, prejudice, etc. (Teasing, distorting facts to people who make hiring and promotion decisions, etc.)

<snip> I'm very sensitive about the idea of appropriating someone else's labels. I have a strong distaste for the idea of speaking on behalf of other people or claiming an identity that isn't mine.

Personally, I appreciate the time you have taken to think about this and be careful not to offend anyone -- but I really believe that there is no problem with your calling yourself HH.

"functionally HoH" sounds pretty accurate, given my experiences.

I think you can drop the word functionally. Like dogmom said above, most people won't care and I agree that most people appreciate shorter vs longer explanations.

My friends have been thinking that I was "HoH" for a long time now, and I know I give a lot of people that impression. They just get confused when I seem hearing in some situations, and HoH in others. <snip>

Many hearing people do. It sounds like the reasons for why our hearing varies differs but the effect is the same.

BTW, as you probably already know, not every hearing person will tell you that they are confused and why. A long time ago someone told me that in negotiations its important to know what the other side's unasked questions are and to answer it for them. If you don't they often won't ask but will come up with an unfavorable and probably untrue answer that will not be helpful to the situation. I find that understanding handy in hearing/HH situations also.

So for example, in my situation, I have often explained to people that I work with, before they asked, why I need to lipread in person but can often handle a phone call. IMHO, that has helped made things go more smoothly.

You may decide to also answer people's unasked questions in your own life and you may find this helpful to you also.

I do have a question for you -- with my type of hearing loss I know what kind of assistive listening devices (ALD) can help me in addition to hearing aids. Have you discussed ALDs with your audiologist? Will the standard ALDs for most HH people also help you? I would think that many of them would, for example an FM system.

 

[Jazzberry]

I<snipp>

That's about right. In quiet situations, I hear quite well. The tests I took showed that I eve have somewhat above average hearing in those situations. But even the slightest noise can disrupt that hearing. Someone picking up a sheet of paper, putting on a jacket, rubbing their feet on the floor... Even a passing car or gust of wind... all of that can cause my hearing to start to falter significantly, and thus begins the guessing games of "What do I think that person said, now?" Plus, tests aside, I find that even in quiet environments I have to really focus to hear someone clearly. If my attention wavers even a little bit, or if I have to think hard about something someone said, I can easily lose comprehension.

If you are like me, you are rarely in soundbooth type conditions. So it's probably not worth it to tell most people that you can hear very well in quiet if its never that quiet when you see them anyway.

 

[Jazzberry]

It would appear that you are confusing the "cochlea" with the "ccochlear nucleus." They are not one and the same and they do not perform the same functions.

There is nothing in what you posted that suggests that information is sent from brain to cochlea. When you are referring to cillia, they are located only in the cochlea of the inner ear. The pathways from the cochlea to the brain are ascending, not descending.

I disagree Jillio. For one thing the articles refer to the OHC which are located in the cochlea.

BTW, we don't have to agree. I explained why I believe what I've read and provided some longer articles available on the web. You stated what you believe -- I think we can leave it at that.

 

[Jazzberry]

Joyce I'm just curious and you seem very open so I hope you won't mind the question. This web site said that in diagnosing CAPD an audiologist will include these tests:

NEUROLOGIC: The second group of tests measure how well the brain responds to various sounds. The technical term is Electrophysiologic tests. Administering these tests involves the use of electrodes, which measure brain response to sound stimuli.

Did you happen to get those group of tests? Would you happen to know if the tests are specific enough that it can pinpoint where in the brain the response is coming from?

 

[joycem137]

If you are like me, you are rarely in soundbooth type conditions. So it's probably not worth it to tell most people that you can hear very well in quiet if its never that quiet when you see them anyway.

Indeed.

So one of the things that has masked my hearing condition for most of my life is the fact that I'm a really good player at "the guessing game." You know what I'm talking about... where people talk and you're guessing what they're saying, using context and other clues to fill in the blanks of what they're saying.

In the past, I've played this game nigh constantly, acting as though I hear everyone just fine. Sometimes it has wound up embarrassing me or making me look stupid, but in many situations, I did it well enough that people didn't really think anything particularly odd about me, just that I seemed strange somehow.

In the past few months I've started being honest about my comprehension with people. Asking people to actually repeat themselves if I didn't understand what they said. Although it definitely helps me a great deal to understand what people are actually saying vs. what I think they're saying, I've noticed that people tend to get frustrated with it. They seem to prefer me guessing. Not everyone, of course. My friends prefer me to ask them to repeat themselves. But strangers and coworkers seem more likely to just want me to understand the first time.

I'm pondering how to manage this. Maybe I should guess on things I'm fairly confident in, but ask about things that I'm really unsure on.

 

[joycem137]

Joyce I'm just curious and you seem very open so I hope you won't mind the question. This web site said that in diagnosing CAPD an audiologist will include these tests:



Did you happen to get those group of tests? Would you happen to know if the tests are specific enough that it can pinpoint where in the brain the response is coming from?

I saw Dr. Judy Paton.. She performed a bunch of hearing tests where she played audio in my ears and I responded by repeating the words I heard or affirming that I hear various sounds. We didn't do any electrode tests.

 

[Jazzberry]

Indeed.

So one of the things that has masked my hearing condition for most of my life is the fact that I'm a really good player at "the guessing game." You know what I'm talking about... where people talk and you're guessing what they're saying, using context and other clues to fill in the blanks of what they're saying.

In the past, I've played this game nigh constantly, acting as though I hear everyone just fine. Sometimes it has wound up embarrassing me or making me look stupid, but in many situations, I did it well enough that people didn't really think anything particularly odd about me, just that I seemed strange somehow.

In the past few months I've started being honest about my comprehension with people. Asking people to actually repeat themselves if I didn't understand what they said. Although it definitely helps me a great deal to understand what people are actually saying vs. what I think they're saying, I've noticed that people tend to get frustrated with it. They seem to prefer me guessing. Not everyone, of course. My friends prefer me to ask them to repeat themselves. But strangers and coworkers seem more likely to just want me to understand the first time.

I'm pondering how to manage this. Maybe I should guess on things I'm fairly confident in, but ask about things that I'm really unsure on.

Since you have had CAPD for a long time, you may not have realized how much you have depended upon lipreading and context.

I know in my case I didn't really understood how well hearing people heard until my 20s. I certainly understood that they heard better than me, but I didn't realize until then how easy hearing was for them.

I believe this is because I was in the habit of not thinking about things I couldn't change, and I believe that I had acquired that habit as a coping mechanism in my childhood. However, in my 20s I got two very bad ear infections in each ear and couldn't wear hearing aids for a long time. That kind of got my attention and I actually took the time to compare my hearing to other people's hearing and reflect about it. I had never, I think by choice, taken the time to really reflect upon my hearing difference from other people before.

I think it takes time for HH people to learn how to communicate effectively with hearing people and hearing people to learn how to communicate effectively with HH people. The reason is that while our physical world boundaries overlaps -- it does cover different territories.

This is basically what I usually do. At some point, early in the game, I let new people know that I lip read. I then tell them that because I lip read I'm going to confirm what we agreed upon so that we can make sure that we're on the same page. I let them know I'm doing this because I can only assume that I'm lipreading them correctly if the conversation makes sense to me -- but that is not enough of a confirmation for me to go ahead and actually make plans or do work based on what we had just discussed. In corporate settings I would send an e-mail or even write a formal memo -- depended upon the personalities and projects involved.

This is not the first thing I usually tell new people. Most of the time I can, with a combination of lipreading and hearing and context, understand them well during the first few minutes of conversation. I may actually understand them for the whole conversation depending upon circumstances -- so if that's the case I'll work it in anyway.

The language/style I use depends upon who I'm dealing with.

Frankly, I find that when I run into problems its not because of the few extra seconds or even minutes it takes to summarize what was agreed upon. It's ego. On an intellectual level, even though they understand why you are repeating the key points they react as though you are taking the alpha position and giving the directives.

I think some people who hear well enough to know what they sound like and can control their voice tones well can make this less of an ego issue.

Facial expressions seem to help also.

Based on how you described your hearing loss I think this would be less of an issue for you than it is for me. However, if you do run into resistance I think it will also be mostly because of ego issues.

Oh, boredom is probably also a factor for some people. I think a light hearted amusing approach can help in those cases. Being human, I'm not always up to it.

Perhaps other people will have additional suggestions.

ETA: Oh, just wanted to add one thing. Back in the days when I was still interviewing for jobs as an employee I would bring up my hearing loss and lip reading by the end of the interview. I would tell them quite frankly that this was my work style (to confirm my understanding at the end of a conversation) and that while it worked for most people, some people reacted to it like a piece of chalk scratching on a black board.

Basically I said, with a smile, that I wanted them to know because I would prefer not to work with people who would react to my conversational style like chalk board scratching. We would both be unhappy and end up wasting each other's time, and what would be the point of that?

That worked enough for me that I was able to get jobs. I'm sure I lost some also --- but I geniunely didn't want to work with someone who couldn't deal with my need to confirm key points of verbal conversations.

The good thing about this was that the person I reported to had bought in to my need to repeat before I went to work for him or her. So, even if it was more of an adjustment than they expected, since they had bought into it they had more of an incentive to get use to it. One person still ended up being a difficult supervisor anyway because it eventually grated on her (along with a few other hearing issues) -- but for most of my supervisors this approach seemed to work.

ETA2: I think another thing that I tend to do is use longer rather than shorter sentences. Its a another way of confirming that we are on the same page without formally taking time out to summerize. If I see that someone is getting irritated, I just remind them that I'm lipreading, basically guessing the conversation, so that this is my way of making sure I'm guessing right.

ETA3: I keep remembering more things! When I ran a meeting, I always had a printed agenda to pass around. I couldn't talk while I was checking my papers but I was usually able to invite someone to play the "entertainer." They knew their job was to make light conversation and crack jokes whenever I had to take a few seconds or moments out to do some calculations or read some notes. That worked very well, I was lucky that I usually had someone available to do that.

 

[Jazzberry]

I saw Dr. Judy Paton.. She performed a bunch of hearing tests where she played audio in my ears and I responded by repeating the words I heard or affirming that I hear various sounds. We didn't do any electrode tests.

Well you are probably not going to like my initial reaction, but I'll share it with you anyway. I suspect that if you didn't have electrode tests that it's not 100% conclusive that you have CAPD and that your audiologist can't be 100% certain where the areas responsible for the CAPD are located.

She is probably going by your symptoms and making an educated guess, granted probably a very well educated guess. This is what health professionals often do.

It reminds me when I first adopted my cats. One of them had a few illnesses that she had to recover from that she had probably picked up from the pet shelter. While the vets examined her, for the most part they did very few tests so I challenged them on that. They explained that they were making an educated guess based on the history, symptoms and statistical odds. It simply wasn't cost effective to throughly test before treating. Odds are that their first guess would work and if it didn't they would look for another approach. Many physicians do the exact same thing for their human patients most of the time.

Maybe you have a different cause for your symptoms. But, realistically, if what is recommended to you helps you communicate better does it really matter?

As long as the professionals aren't missing tumors or cancer or something else that is lethal (I would assume that this is extremely unlikely), probably not.

The only thing I would be curious about if I were in your position is what are the odds that you have a different cause for the same symptoms that would be better handled by a different treatment? I would bring that up just for the heck of it.

 

[jillio]

I disagree Jillio. For one thing the articles refer to the OHC which are located in the cochlea.

BTW, we don't have to agree. I explained why I believe what I've read and provided some longer articles available on the web. You stated what you believe -- I think we can leave it at that.

No, we don't have to agree, and you can believe anything you choose. But there is nothing in your articles copy and pastes that suggest that the auditory pathways are descending. That, however is what would have to occur based on your assumptions.

No, I stated neurological biologicial facts. My opinion has nothing to do with it.

 

[Jazzberry]

No, we don't have to agree, and you can believe anything you choose. But there is nothing in your articles copy and pastes that suggest that the auditory pathways are descending. That, however is what would have to occur based on your assumptions.

No, I stated neurological biologicial facts. My opinion has nothing to do with it.

I sincerely believe that you misread the links.

 

[jillio]

Well you are probably not going to like my initial reaction, but I'll share it with you anyway. I suspect that if you didn't have electrode tests that it's not 100% conclusive that you have CAPD and that your audiologist can't be 100% certain where the areas responsible for the CAPD are located.

She is probably going by your symptoms and making an educated guess, granted probably a very well educated guess. This is what health professionals often do.

It reminds me when I first adopted my cats. One of them had a few illnesses that she had to recover from that she had probably picked up from the pet shelter. While the vets examined her, for the most part they did very few tests so I challenged them on that. They explained that they were making an educated guess based on the history, symptoms and statistical odds. It simply wasn't cost effective to throughly test before treating. Odds are that their first guess would work and if it didn't they would look for another approach. Many physicians do the exact same thing for their human patients most of the time.

Maybe you have a different cause for your symptoms. But, realistically, if what is recommended to you helps you communicate better does it really matter?

As long as the professionals aren't missing tumors or cancer or something else that is lethal (I would assume that this is extremely unlikely), probably not.

The only thing I would be curious about if I were in your position is what are the odds that you have a different cause for the same symptoms that would be better handled by a different treatment? I would bring that up just for the heck of it.

Symptoms are specific to brain areas involved; therefore, symptoms can point directly to the area involved in creating the symptoms. For instance, if we see a person who is able to understand spoken communication, but is not able to produce spoken communication, we know that they have a specific expressive aphasia and what area of the brain in involved.

What do you think might be causing the symptoms of CAPD if not CAPD?

 

[joycem137]

Well you are probably not going to like my initial reaction, but I'll share it with you anyway. I suspect that if you didn't have electrode tests that it's not 100% conclusive that you have CAPD and that your audiologist can't be 100% certain where the areas responsible for the CAPD are located.

She is probably going by your symptoms and making an educated guess, granted probably a very well educated guess. This is what health professionals often do.

It reminds me when I first adopted my cats. One of them had a few illnesses that she had to recover from that she had probably picked up from the pet shelter. While the vets examined her, for the most part they did very few tests so I challenged them on that. They explained that they were making an educated guess based on the history, symptoms and statistical odds. It simply wasn't cost effective to throughly test before treating. Odds are that their first guess would work and if it didn't they would look for another approach. Many physicians do the exact same thing for their human patients most of the time.

Maybe you have a different cause for your symptoms. But, realistically, if what is recommended to you helps you communicate better does it really matter?

As long as the professionals aren't missing tumors or cancer or something else that is lethal (I would assume that this is extremely unlikely), probably not.

The only thing I would be curious about if I were in your position is what are the odds that you have a different cause for the same symptoms that would be better handled by a different treatment? I would bring that up just for the heck of it.

Yeah. I think you're right. Based on her tests and my described symptoms, she has diagnosed the most likely culprit. I suppose I could always go in for more confirmation, more expensive tests, etc. But everything I've read and heard seems to indicate that they wouldn't be able to find anything particularly interesting. The only possible misdiagnosis I can think of would be that I have ADD, ADHD, or Autism, but I don't find any of those particularly likely, given my other life experiences. The fact that I've dealt with these symptoms for my entire life suggests that it's not a tumor or cancer or anything that is getting progressively worse.

To me, the important thing is to have recognized this as a real thing happening to me. Before a few months ago, I just knew I was uncomfortable and awkward and not very functional in various social situations. I couldn't figure out what they all had in common until now: They're all situations where reduced speech comprehension was giving me significant trouble. Phones, parties, offices, group conversations, etc. Now I have an answer and some scientific testing to back it up.

If nothing else, I'm just happy to have had my symptoms confirmed, you know?

EDIT: From reading the website you linked, it doesn't seem as though the electrode test is any sort of "standard" CAPD test. In fact, there are apparently few standard tests at this time. The audi was telling me that due to the small incidence of CAPD, there aren't a lot of doctors studying it. There's a lot more people studying sensorineural hearing loss, conductive hearing loss, etc. So who knows how accurate any of this stuff is, how often people get false positives, etc. At the end of the day, she did a test that produced results that match my expressed symptoms, which objectively confirms CAPD as best as we probably can. There's probably not really a whole lot more to do except double and triple check the initial findings, which as you point out, just doesn't seem necessary.

 

[jillio]

Yeah. I think you're right. Based on her tests and my described symptoms, she has diagnosed the most likely culprit. I suppose I could always go in for more confirmation, more expensive tests, etc. But everything I've read and heard seems to indicate that they wouldn't be able to find anything particularly interesting. The only possible misdiagnosis I can think of would be that I have ADD, ADHD, or Autism, but I don't find any of those particularly likely, given my other life experiences. The fact that I've dealt with these symptoms for my entire life suggests that it's not a tumor or cancer or anything that is getting progressively worse.

To me, the important thing is to have recognized this as a real thing happening to me. Before a few months ago, I just knew I was uncomfortable and awkward and not very functional in various social situations. I couldn't figure out what they all had in common until now: They're all situations where reduced speech comprehension was giving me significant trouble. Phones, parties, offices, group conversations, etc. Now I have an answer and some scientific testing to back it up.

If nothing else, I'm just happy to have had my symptoms confirmed, you know?

EDIT: From reading the website you linked, it doesn't seem as though the electrode test is any sort of "standard" CAPD test. In fact, there are apparently few standard tests at this time. The audi was telling me that due to the small incidence of CAPD, there aren't a lot of doctors studying it. There's a lot more people studying sensorineural hearing loss, conductive hearing loss, etc. So who knows how accurate any of this stuff is, how often people get false positives, etc. At the end of the day, she did a test that produced results that match my expressed symptoms, which objectively confirms CAPD as best as we probably can. There's probably not really a whole lot more to do except double and triple check the initial findings, which as you point out, just doesn't seem necessary.

You are correct. The diagnosis of CAPD is always an objective one. If the diagnosis matches your symptoms, and you are satisfied with CAPD as the explanation for what you have been dealing with all your life, there is really no need for confirmation from second audi, or undergoing tests that really haven't been found to be valid in the diagnosis.

Having the diagnosis, as you say, really doesn't change the fact that you have it, but it does provide validation that what you have been experiencing all along is very real. That counts for more than anything else in cases like this. So many people with CAPD have had their hearing tested frequently only to be told that there is nothing wrong with their hearing. Well, there is something wrong with their hearing. It is just that most audis don't look past the ear. CAPD is a dysfunction at the neurological end of the hearing process. I am glad that you received your diagnosis just for the validation.

 

[jillio]

I sincerely believe that you misread the links.

I sincerely believe that it is the other way around. Could you please show me anything that supports the assumption that auditory pathways are descending in function?

 

[Bottesini]

I sincerely believe that it is the other way around. Could you please show me anything that supports the assumption that auditory pathways are descending in function?

The descending auditory pathway

The auditory system transmits information from the cochlea to the auditory cortex. Another system follows a similar path, but in reverse, from the cortex to the cochlear nuclei. This is the descending auditory pathway. In general, the descending pathway may be regarded as exercising an inhibitory function by means of a sort of negative feedback. It may also determine which ascending impulses are to be blocked and which are allowed to pass to other centres in the brain. The olivocochlear bundle, which arises from the olivary complex, is involved in sharpening or otherwise modifying the analysis that is made in the cochlea.

http://openlearn.open.ac.uk/mod/oucontent/view.php?id=398672&section=7.3

 

[Jazzberry]

Yeah. I think you're right. Based on her tests and my described symptoms, she has diagnosed the most likely culprit. I suppose I could always go in for more confirmation, more expensive tests, etc. But everything I've read and heard seems to indicate that they wouldn't be able to find anything particularly interesting. The only possible misdiagnosis I can think of would be that I have ADD, ADHD, or Autism, but I don't find any of those particularly likely, given my other life experiences. The fact that I've dealt with these symptoms for my entire life suggests that it's not a tumor or cancer or anything that is getting progressively worse.

To me, the important thing is to have recognized this as a real thing happening to me. Before a few months ago, I just knew I was uncomfortable and awkward and not very functional in various social situations. I couldn't figure out what they all had in common until now: They're all situations where reduced speech comprehension was giving me significant trouble. Phones, parties, offices, group conversations, etc. Now I have an answer and some scientific testing to back it up.

If nothing else, I'm just happy to have had my symptoms confirmed, you know?

EDIT: From reading the website you linked, it doesn't seem as though the electrode test is any sort of "standard" CAPD test. In fact, there are apparently few standard tests at this time. The audi was telling me that due to the small incidence of CAPD, there aren't a lot of doctors studying it. There's a lot more people studying sensorineural hearing loss, conductive hearing loss, etc. So who knows how accurate any of this stuff is, how often people get false positives, etc. At the end of the day, she did a test that produced results that match my expressed symptoms, which objectively confirms CAPD as best as we probably can. There's probably not really a whole lot more to do except double and triple check the initial findings, which as you point out, just doesn't seem necessary.

Joyce, I think we are on the same page.

I'm glad you were able to find someone who could diagnose what your symptoms mean. I hope she gave you suggestions on how you can make it easier to hear and listen in various situations, and ideas on how to find more suggestions -- e.g. web sites, books, etc. This is an area that regardless of the reason why someone has problems hearing in noise (CAPD, APD, or sensineural hearing loss), many of the suggestions on how to make it easier are probably going to be the same.

Either way, maybe we could start a thread on it.

 

[Jazzberry]

Symptoms are specific to brain areas involved; therefore, symptoms can point directly to the area involved in creating the symptoms. For instance, if we see a person who is able to understand spoken communication, but is not able to produce spoken communication, we know that they have a specific expressive aphasia and what area of the brain in involved.

What do you think might be causing the symptoms of CAPD if not CAPD?

My post were influenced by another issue. In general, when someone has an uncommon physical issue, what can they do to make sure that they have received a satisfactory diagnosis and good advice?

In the USA, in this day and age and under most existing insurance plans, I think its unlikely that one will be "overtested." Medical appointments tend to be very short and we can see from forums like this one that people find it very beneficial to get additional information from others besides their doctors. In the current health system, it appears that most doctors simply don't have the time to really inform their patients.

It can also be easy to end up with a wrong advice, a wrong diagnosis, misinformation, dated information, etc.

One of the things that have worked for me is to try to find out what diagnosis tools are available to the health professional and why they choose to use the ones that they do. What are the likely diagnoses, how would the treatment differ from the various possibilities, how does one know when to stop the diagnosis process?

Hearing loss has not been my only issue. I have non-optimally designed knee joints that haven't held up to sports injuries and another boring issue that is off topic to this forum. I've found that when I've been proactive in my health issues I've ended up with much better care. The way I've been proactive is by doing some research, asking other people with similar histories about their experiences, and asking my doctors and other health care professionals carefully considered questions.

Reading between the lines in Joyce's posts, I wouldn't be surprised if she could confirm that getting to this point, a CAPD diagnosis, was not easy for her to get.

But now she has it, and this gives her better information to figure out how to make some listening situations easier for her.

--

Sometimes I like to use examples. Lets pretend that Joyce lived out in the boondocks somewhere and her only local option was to go to a poorly informed and overlooked-by-state regulators retailer who owned a combo eyeglasses/hearing aid store.

He could say -- "Well since you have trouble listening its likely that you have a minor high frequency loss. I'll let you try out these aids for a month and if you like them, keep them. If you don't, we'll try something else."
(Unfortunately, I've heard of crazier stories.)

For most people in Joyce's situation, a minor high frequency loss would probably be the reason for her listening difficulties. But would it be a good idea for her to try the retailer's solution? Obviously not. A poor fitting hearing aid can damage existing hearing and not running tests to diagnose the cause of her symptoms has the possibility of putting her health in serious jeopardy.

I think that is why if we can, we are all better off looking into what information is available.

Based on Joyce's posts, it seems she has done this. Even though there are no standardized tests for C/APD diagnosis and her audiologists didn't opt to give her more of the ones that are available -- it appears that Joyce has looked into it enough that its very unlikely that there is another cause that could be the source of similar symptoms. Following suggestions on how to make it easier to hear in noisy situations is not going to harm her and can only help her.

 

[Jazzberry]

I sincerely believe that it is the other way around. Could you please show me anything that supports the assumption that auditory pathways are descending in function?

http://openlearn.open.ac.uk/mod/oucontent/view.php?id=398672&section=7.3

Botts, thanks for finding another source.

Jillio, the posts I already made explains that the auditory pathways work both ways, that is, the auditory pathways are both afferent and efferent.

I'll repost what I already posted as I don't have time to dig up more sources now.

Auditory System A slide show on the hearing system. On slide 31 of 57:

The actions of the OHCs can be modified by efferent nerve fibers from the brain.
-- the brain can modify the sensitivity of the cochlea.

The above quote is now sans my definitions, so it should be easier to read.

OHCS is a common abbreviation for outer hair cells, which are found in the cochlea.


I included the above link in my earlier post because it was short and to the point. Then I included another link that had more credibility since it comes from a professor who graduated from Columbia University and is currently affiliated with Yale University. (Google Joseph Santos-Sacchi, quite a few credible web sites come up.) It has a lot more technical language, but its not always easy to find the perfect link for a forum post.

From the Yale Ear Lab at Yale University

The exquisite sensitivity and frequency resolving power of the mammalian inner ear depends upon interactions between the two receptor cells of the organ of Corti, inner (IHC) and outer (OHC) hair cells. Whereas inner hair cells appear to function solely as receptors of acoustic information, OHCs function both as receptors and effectors, producing motile responses as a function of transmembrane potential fluctuations. These motile responses are believed to modify the mechanical input to the inner hair cells which receive the majority of afferent innervation, thereby enhancing the gross frequency tuning afforded by basilar membrane mechanics. Currently, we are studying the effector role of the OHC with electrophysiological and displacement measurement techniques using isolated OHCs from the guinea pig. In particular, we use the whole cell voltage clamp to study the voltage dependence of the mechanical response, and the corresponding nonlinear charge associated with the motility voltage sensor. Estimates of the mechanical frequency response are made in order to assess the potential significance of OHC motility in the in vivo feedback scheme. In addition to the work on OHCs, we are also involved with studies on electrical coupling in the supporting cells, as well as characterization of the ionic currents in these cells and in spiral ganglion cells.

(I did add bolding to the above quote.)

As I'm sure you know, receptors (sense organs) are directly connected with afferent nervous pathways which go towards the central nervous system, or the brain and spine. Effectors are directly connected with efferent nervous pathways which go away from the central nervous system (brain and spine). Muscles, glands, and the ciliated cellls of the inner ear are examples of effectors.

I'm guessing that you read my post very quickly, and so ended up misreading it.

 

[Anij]

Yeah. I think you're right. Based on her tests and my described symptoms, she has diagnosed the most likely culprit. I suppose I could always go in for more confirmation, more expensive tests, etc. But everything I've read and heard seems to indicate that they wouldn't be able to find anything particularly interesting. The only possible misdiagnosis I can think of would be that I have ADD, ADHD, or Autism, but I don't find any of those particularly likely, given my other life experiences. The fact that I've dealt with these symptoms for my entire life suggests that it's not a tumor or cancer or anything that is getting progressively worse.

To me, the important thing is to have recognized this as a real thing happening to me. Before a few months ago, I just knew I was uncomfortable and awkward and not very functional in various social situations. I couldn't figure out what they all had in common until now: They're all situations where reduced speech comprehension was giving me significant trouble. Phones, parties, offices, group conversations, etc. Now I have an answer and some scientific testing to back it up.

If nothing else, I'm just happy to have had my symptoms confirmed, you know?

EDIT: From reading the website you linked, it doesn't seem as though the electrode test is any sort of "standard" CAPD test. In fact, there are apparently few standard tests at this time. The audi was telling me that due to the small incidence of CAPD, there aren't a lot of doctors studying it. There's a lot more people studying sensorineural hearing loss, conductive hearing loss, etc. So who knows how accurate any of this stuff is, how often people get false positives, etc. At the end of the day, she did a test that produced results that match my expressed symptoms, which objectively confirms CAPD as best as we probably can. There's probably not really a whole lot more to do except double and triple check the initial findings, which as you point out, just doesn't seem necessary.

I just thought I would add some additional information regarding APD/CAPD that I've learned from multiple Audiologists over the 25 years. All of these Audiologists have specialized in a branch of Audiology dealing with hearing disorders and auditory processing problems such as CAPD, APD, Auditory Neuropathy etc. - Situations in which it is primarily the brain (neurological), not the ear (audiological) causing the hearing and auditory comprehension difficulties.

With APD and CAPD the older a person is, the more inaccurate the neurological medical tests (one would get in a hospital etc) traditionally recommended to help diagnose APD/CAPD become. Ideally testing needs to be done pre or peri-lingually to be even moderately conclusive and the farther one gets from that neurological stage of development, the less accurate those tests become. The problem is that most people with APD/CAPD aren't "caught" until they're in their teens - unless they also have some amount of hearing loss.
By the time someone is a teen or adult, most, if not all audiologists specializing in APD/CAPD/AN etc agree that the most accurate way to diagnose functional APD or CAPD is basically doing the audiological testing that joycem137 explained she had done.
Teen and adult APD, CAPD testing consists of an interview with the client discussing when and how they have difficulties hearing & understanding, with the Audiologist asking specific questions that rule in , or rule out APD or CAPD as a likely diagnosis, then after that there is an expanded form of a standard audiogram (pure tones, in silence, & with background noise), a tympanogram, and word, phrase and sound comprehension tests done in silence, then with background noise. These audiological tests are usually more conclusive than any other neurological testing and if someone tests "positive" for APD/CAPD from this series of tests, there isn't really any point in doing further medical testing (ABR, EP, etc). Not only is it unlikely that further testing would offer any better or more functional conclusions, but in fact further testing (if APD/CAPD is determined to "fit") will most often be - to put it bluntly - a complete waste of everyone's time which draws no beneficial results.

One of the reasons determining the specifics of someone with APD/CAPD (especially teens and adults) is because the human brain is so very plastic that if something happens (physical trauma, stroke, oxygen deprivation etc) which impacts the hearing, vision, even mobility etc the brain begins making new connections, rewiring itself and adapting.

I hope this might help anyone reading thinking that the only way to "properly" be diagnosed with APD or CAPD is via the various neurological tests which some websites mention. While these tests may be helpful for some (mostly with very young children), the testing done by and Audiologist is just as, if not more conclusive in diagnosing APD/CAPD, espeically in adults.

 

[TXgolfer]

Botts, thanks for finding another source.

Jillio, the posts I already made explains that the auditory pathways work both ways, that is, the auditory pathways are both afferent and efferent.

I'll repost what I already posted as I don't have time to dig up more sources now.

Auditory System A slide show on the hearing system. On slide 31 of 57:



The above quote is now sans my definitions, so it should be easier to read.

OHCS is a common abbreviation for outer hair cells, which are found in the cochlea.


I included the above link in my earlier post because it was short and to the point. Then I included another link that had more credibility since it comes from a professor who graduated from Columbia University and is currently affiliated with Yale University. (Google Joseph Santos-Sacchi, quite a few credible web sites come up.) It has a lot more technical language, but its not always easy to find the perfect link for a forum post.

From the Yale Ear Lab at Yale University



(I did add bolding to the above quote.)

As I'm sure you know, receptors (sense organs) are directly connected with afferent nervous pathways which go towards the central nervous system, or the brain and spine. Effectors are directly connected with efferent nervous pathways which go away from the central nervous system (brain and spine). Muscles, glands, and the ciliated cellls of the inner ear are examples of effectors.

I'm guessing that you read my post very quickly, and so ended up misreading it.

Cool info. I feel like I just took a whole semester in one day

I found a "For dummies" version...since...ya know....I'm a dummy.

Auditory Nerve
The auditory nerve is a bundle of nerve fibers that carries hearing information between the cochlea the brain.
Usually, hearing loss that is called "sensorineural" or "nerve deafness" is actually caused by problems with the cochlea, instead of the actual auditory nerve, but a very small percentage of hearing loss is caused by problems with the nerve, itself ... usually related to acoustic neuromas (tumors) on the nerve covering. The auditory nerve and the vestibular nerve, which carries balance information from the semicircular canals to the brain, join together as they pass through the bony canals of your skull. Together, they are called the 8th cranial nerve, or the Vestibulocochlear nerve. Also passing through the same bony canals of your skull is the 7th cranial nerve, or the facial nerve, which supports facial expression and sensation. It's interesting to note that while many of the nerve fibers in this bundle do carry the sound signal to the brain, most (some estimates are as much as 2 thirds) of the nerve fibers actually carry information BACK to the cochlea from the brain. The cochlea can then use this information to suppress sound you are not interested in ... like background noise. This explains why hearing aids (which amplify sounds) can help you hear better, but they do not completely correct a hearing loss.

It also explains why one of the biggest problems that hard of hearing people face is the effect of background noise. Even the best hearing aid can only amplify sound; it can't converse with your brain and help your brain eliminate background noise the way a normal working ear can do. Some hearing aids use multiple microphones to to (somewhat) suppress background noise by suppressing omni directional sound and enhancing sounds from the front of the wearer, and that works well ... but not nearly as well as your cochlea does by communicating with your brain over the auditory nerve.

http://www.nchearingloss.org/audnerve.htm