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?
Use an expert in the field. That is what she has done.
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.
Most are not terribly concerned about insurance coverage if they are in the habit of overtesting. A doctor will comply if a patient insists on further testing. It isn't like this audi has recommended further testing. Further testing would come at the patient's request.
It can also be easy to end up with a wrong advice, a wrong diagnosis, misinformation, dated information, etc.
It can also be easy to suspect that, particularly when it is a case on which you do not have detailed information or less that accurate understanding of the information which you do have.
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?
You have recommended tools that are not considered effective for the diagnosis of CAPD. Just because a tool is available does not mean it is indicated for use in all cases.
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.
There is nothing to indicate that this poster is not being proactive. There is a difference between being proactive and second guessing.
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.
Of course it wasn't. It is a rare diagnosis, and all other possibilities are generally looked at prior to coming up with a CAPD diagnosis. That is why it is silly to suggest that it is a "wrong diagnosis" and that further testing should be done to confirm.
But now she has it, and this gives her better information to figure out how to make some listening situations easier for her.
The diagnosis in and of itself doesn't give her that information. The treatment following the diagnosis will do that.
--
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.
That is not the case here. Hypotheticals are useless.
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.)
Again, hypotheticals are useless. Let's stick to what is actually going on in this case.
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.
Your intent is obvious. But on the off chance that I have misjudged your intent, I will be happy to discuss neurological processes with you as soon as you demonstrate understanding of the basics.
