thanks all for the mold advice!

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HOH33stars

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hey all!
i did end up going to a new audi last week...i was a moron and forgot my audiogram, so i brought it back today for another appointment. he made the impressions and will order me new molds...but this was all after retesting my hearing again (i didn't want it, but he said it was so he could determine the best way to adjust the aids AND to determine which molds to order for me...)...
so he retested me and we determined why i have to keep turning these ones up too...
my hearing is now in the "severe" range. yup. it's gone down even more. so at the start of june i only had a mild loss and now i'm in the "severe" range with no doctor having a clue why.
he obviously strongly suggested that i return back to my ENT immediately and make sure i keep the appointment that i have in two weeks. i'm not going. there's no point. the doctor has already said that there is nothing they can do since they don't know what's causing the loss and it's crazy to get put on steroids. plus he said all that they would do for me even if they did know what was wrong would be to adjust my hearing aids so what's the point. i don't want a brainstem test (ABR) or any of that crap.
in fact i don't want my hearing tested again period. i'm tired of each time going in there and finding out that it's gone down more. screw it. i just need to deal with it.

in any case-my new molds are on order so hopefully i won't be whistling anymore soon AND he upped the volume on my aids so i can actually hear without turning up to max anymore. the guy is creepy, but waaaaayyyyy better than my other audi! just need those molds and then it's peace out audiologists!
 
HOH33stars said:
hey all!
i did end up going to a new audi last week...i was a moron and forgot my audiogram, so i brought it back today for another appointment. he made the impressions and will order me new molds...but this was all after retesting my hearing again (i didn't want it, but he said it was so he could determine the best way to adjust the aids AND to determine which molds to order for me...)...
so he retested me and we determined why i have to keep turning these ones up too...
my hearing is now in the "severe" range. yup. it's gone down even more. so at the start of june i only had a mild loss and now i'm in the "severe" range with no doctor having a clue why.
he obviously strongly suggested that i return back to my ENT immediately and make sure i keep the appointment that i have in two weeks. i'm not going. there's no point. the doctor has already said that there is nothing they can do since they don't know what's causing the loss and it's crazy to get put on steroids. plus he said all that they would do for me even if they did know what was wrong would be to adjust my hearing aids so what's the point. i don't want a brainstem test (ABR) or any of that crap.
in fact i don't want my hearing tested again period. i'm tired of each time going in there and finding out that it's gone down more. screw it. i just need to deal with it.

in any case-my new molds are on order so hopefully i won't be whistling anymore soon AND he upped the volume on my aids so i can actually hear without turning up to max anymore. the guy is creepy, but waaaaayyyyy better than my other audi! just need those molds and then it's peace out audiologists!
Click to expand...
I am sorry you have lost more of your hearing, and so quickly. Did your ENT do an MRI or CT scan already? Did he do bloodwork? I can't seem to remember if you mentioned either of those things before. If he hasn't done any of that, then he has no business telling you he doesn't know why you have lost your hearing. I can understand why you don't want to take the steroids, as they can harm the body if not taken correctly, but they have helped some people.
It's hard, but you will get through it and you already have tools that will make it easier for you to adjust. Hang in there, and good news about the molds.
 
i'm glad you found yourself a new audi. :)

i know exactly what you mean about not wanting to take steroids. when my hearing loss reached the severe range, my ent wanted me to take prednisone in the hopes of regaining it, but i refused due to the side effects of depression and mood swings (something i already deal with being bipolar). i don't regret not taking the prednisone at all because the last thing i wanted to do was to sink into a deep, dark depression that i couldn't get out of. i was depressed enough about the fact that my hearing dropped -- i didn't need *another* reason to feel awful.

instead of constantly looking for cures, i attended my local deafblind center (i was referred there by a pdoc after suffering major depression following my significant drop in hearing) and learned how to successfully cope with my deafness instead of always looking for a way to improve my hearing.
 
But after we all passionately argued our own type of mold, she forgot to say what kind she is getting!:hmm:
 
It's good that the newer audi didn't charge u for adjusting ur aids. The canadian hearing society here when i went to them to see if i liked it there was tooo expensive. $60 for a hearing test and $80 to adjust my hearing aids...yaaa right!
Did u get full molds or skeleton molds?
 
I guess for me, I just wanted an answer and also I am a "what if" person. What if I didn't have the MRI or CT? Well, although there wasn't one, a tumor can cause sudden hearing loss. Or a blood vessel resting on a nerve. Those had to be ruled out.
What if I hadn't had all the blood work done? With me having Meneire's disease, I had other factors too. The MM can be triggered by a virus, like Chicken Pox or Herpes, allergies, medications,autoimmune disorders, all sorts of things. So, for a while, there was a chance that if we could find one of those answers, we could have slowed down the hearing loss by treating the MM.
What if I didn't take the steroids and they could have helped me not lose more hearing?
Why was my loss so sudden? Although it took the actual CI surgery to find out, I do have an answer and for me it helps. I know I am deaf, will always be deaf, even if the implant works beautifully. It helped me find closure and work through my grief better.
We all have to deal with sudden hearing loss in our own ways, which is why ad is so great. It is a sounding board and hopefully, a thought or comment someone puts out there will give the help needed.
 
Bottesini said:
But after we all passionately argued our own type of mold, she forgot to say what kind she is getting!:hmm:
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haha!
i actually still don't know! all that i know is he took the full impression and "smoothed out" the top to make sure it really shaped my ear well...really took the time to get a good impression. he never did say though what type i was getting...mostly because i was pretty upset about the fact that my hearing had gone down more.
i didn't even ask about colors lol so i know i'll probably be getting the white/clear which at this point is fine.
 
etalton said:
I guess for me, I just wanted an answer and also I am a "what if" person. What if I didn't have the MRI or CT? Well, although there wasn't one, a tumor can cause sudden hearing loss. Or a blood vessel resting on a nerve. Those had to be ruled out.
What if I hadn't had all the blood work done? With me having Meneire's disease, I had other factors too. The MM can be triggered by a virus, like Chicken Pox or Herpes, allergies, medications,autoimmune disorders, all sorts of things. So, for a while, there was a chance that if we could find one of those answers, we could have slowed down the hearing loss by treating the MM.
What if I didn't take the steroids and they could have helped me not lose more hearing?
Why was my loss so sudden? Although it took the actual CI surgery to find out, I do have an answer and for me it helps. I know I am deaf, will always be deaf, even if the implant works beautifully. It helped me find closure and work through my grief better.
We all have to deal with sudden hearing loss in our own ways, which is why ad is so great. It is a sounding board and hopefully, a thought or comment someone puts out there will give the help needed.
Click to expand...

no...no MRI or CT was suggested by any of the docs that i recommended. my old audi wanted one...but finances are a huge issue and the doctors decided anyway that it wasn't needed.
i don't like the fact that i don't know what caused it...i mean someone asks you, "why are you deaf?" and you say "i don't know why it happened" they look at you like you have 3 heads. or how do you explain that you loss your hearing over the course of a few months and the doctors have no idea why?
and you're right...there's always all of those "what ifs"...
now i'm just trying to get to a point of acceptance.
 
etalton said:
I am sorry you have lost more of your hearing, and so quickly. Did your ENT do an MRI or CT scan already? Did he do bloodwork? I can't seem to remember if you mentioned either of those things before. If he hasn't done any of that, then he has no business telling you he doesn't know why you have lost your hearing. I can understand why you don't want to take the steroids, as they can harm the body if not taken correctly, but they have helped some people.
It's hard, but you will get through it and you already have tools that will make it easier for you to adjust. Hang in there, and good news about the molds.
Click to expand...

no MRI or CT, but yes to bloodwork-it was supposedly normal.
 
I find it very hard to believe that a dr wouldn't suggest an MRI or CT..those are usually routine with any hearing loss whether sudden, late deafened, etc...ESP sudden..i had both and bloodwork...they found nothing abnormal like tumors or bad nerves or clots or anything...so they think its genetic/cuz of all the damage my ears have gone thru since i was a baby...
 
Hey there,

I want to start with telling you a bit of my story...

I was born hearing, by 18 months I was hard of hearing. My hearing stayed pretty stable with a moderate-severe loss until I turned 18. In one night I lost 30 dB. I waited two days to go see my audiologist, thinking it could just be an ear infection. I saw my audiologist at 9:00 in the morning and she re-tested my hearing. We found it to be severe-profound in both ears.

I spent the rest of the day going to different doctors, finally ending up with an ENT. They suggested I try steroids but I knew I had a genetic progressive hearing loss so I decided against it.

That was on a Fri, by the time I saw my audiologist again on Monday my hearing loss was profound with no response past 3000Hz in my right ear, and 2000Hz in my left.

Now, my hearing loss is profound (between 110-120 dB up to 1000Hz and no response past that) and I don't know if it will drop more. Though it seems to have plateaued for now.

Like you, I decided to not do any further testing. No ABR (I have had them before), no hearing tests, nothing. Having said that we also know the cause of my hearing loss. I have a genetic hearing loss called DPHL, or Dominant Progressive Hearing Loss. This has been confirmed and that is the only reason I didn't pursue more testing.

Now I will let my audiologist test my hearing but she is the only one. We have a good relationship and I trust her.

My point, it's one thing to deny testing when you know the reason. Without a CT or an MRI, or any other testing, there is no way to know if something serious is going on. Tumors, neurological problems, inner ear problems, autoimmune disorders, etc.

What you are doing is, in a sense, self-harming or suicidal. It's one thing to deny treatment if you know that the cause isn't life threatening. Anyway, you are an adult and can make your own choices. I just wanted to throw that out there.

Jenny
 
JennyB said:
Hey there,

I want to start with telling you a bit of my story...

I was born hearing, by 18 months I was hard of hearing. My hearing stayed pretty stable with a moderate-severe loss until I turned 18. In one night I lost 30 dB. I waited two days to go see my audiologist, thinking it could just be an ear infection. I saw my audiologist at 9:00 in the morning and she re-tested my hearing. We found it to be severe-profound in both ears.

I spent the rest of the day going to different doctors, finally ending up with an ENT. They suggested I try steroids but I knew I had a genetic progressive hearing loss so I decided against it.

That was on a Fri, by the time I saw my audiologist again on Monday my hearing loss was profound with no response past 3000Hz in my right ear, and 2000Hz in my left.

Now, my hearing loss is profound (between 110-120 dB up to 1000Hz and no response past that) and I don't know if it will drop more. Though it seems to have plateaued for now.

Like you, I decided to not do any further testing. No ABR (I have had them before), no hearing tests, nothing. Having said that we also know the cause of my hearing loss. I have a genetic hearing loss called DPHL, or Dominant Progressive Hearing Loss. This has been confirmed and that is the only reason I didn't pursue more testing.

Now I will let my audiologist test my hearing but she is the only one. We have a good relationship and I trust her.

My point, it's one thing to deny testing when you know the reason. Without a CT or an MRI, or any other testing, there is no way to know if something serious is going on. Tumors, neurological problems, inner ear problems, autoimmune disorders, etc.

What you are doing is, in a sense, self-harming or suicidal. It's one thing to deny treatment if you know that the cause isn't life threatening. Anyway, you are an adult and can make your own choices. I just wanted to throw that out there.

Jenny
Click to expand...

the only reason i've gotten to this point is simply because the doctor told me there is nothing that they can do whether they know what's wrong or not. i asked him how he would treat the hearing loss if he knew what was causing it and his response was exactly what i'm doing now. i asked him if i should be concerned about tumors, etc. and he said that since i have no other symptoms that he has no reason to believe that is the cause. he does think that it is autoimmune, however since it's not affecting anything else, and it didn't dramatically show up in blood work, he doesn't want to try steroids since i'm so young and he doesn't want to 100% say that's what it is. since i've asked a few doctors there and they've all given me the same response, i find it pointless to keep wasting money for them to keep telling me that they don't know the cause and to keep doing what i'm doing.
 
HOH33stars said:
the only reason i've gotten to this point is simply because the doctor told me there is nothing that they can do whether they know what's wrong or not. i asked him how he would treat the hearing loss if he knew what was causing it and his response was exactly what i'm doing now. i asked him if i should be concerned about tumors, etc. and he said that since i have no other symptoms that he has no reason to believe that is the cause. he does think that it is autoimmune, however since it's not affecting anything else, and it didn't dramatically show up in blood work, he doesn't want to try steroids since i'm so young and he doesn't want to 100% say that's what it is. since i've asked a few doctors there and they've all given me the same response, i find it pointless to keep wasting money for them to keep telling me that they don't know the cause and to keep doing what i'm doing.
Click to expand...

Sudden hearing loss = steroids...autoimmune or not. That is THE treatment, regardless of age. I find it hard to believe, or your doctors know nothing.

Tumors on the auditory nerve can only effect hearing, it's very possible.

Someone is lying here, you or the doctors.
 
JennyB said:
Sudden hearing loss = steroids...autoimmune or not. That is THE treatment, regardless of age. I find it hard to believe, or your doctors know nothing.

Tumors on the auditory nerve can only effect hearing, it's very possible.

Someone is lying here, you or the doctors.
Click to expand...

i know that steroids is the treatment regardless of age. i challenged the doctor, and got a 2nd opinion (in that same clinic though because of my insurance). that was what i was told...and i trusted those doctors. what else should i do? like...i want this all to stop and i want my hearing to be normal...i already saw two doctors (actually 3...but the one sent me up to the other one because he wanted his opinion). they keep telling me that they're concerned about the side effects of the steroids if it's not actually autoimmune (even though they keep saying that's what it has to be).
i really don't know what else to do? i can't afford to pay out of pocket to go to pittsburgh or someplace like that-this is who my insurance sent me to-so now what? i already yelled at the 2nd doctor because they weren't doing anything, they just sent me for more tests and said we just have to wait. i trust the doctors simply because i'm petrified and have no concept of any of this.
 
HOH33stars said:
i know that steroids is the treatment regardless of age. i challenged the doctor, and got a 2nd opinion (in that same clinic though because of my insurance). that was what i was told...and i trusted those doctors. what else should i do? like...i want this all to stop and i want my hearing to be normal...i already saw two doctors (actually 3...but the one sent me up to the other one because he wanted his opinion). they keep telling me that they're concerned about the side effects of the steroids if it's not actually autoimmune (even though they keep saying that's what it has to be).
i really don't know what else to do? i can't afford to pay out of pocket to go to pittsburgh or someplace like that-this is who my insurance sent me to-so now what? i already yelled at the 2nd doctor because they weren't doing anything, they just sent me for more tests and said we just have to wait. i trust the doctors simply because i'm petrified and have no concept of any of this.
Click to expand...

Then stop refusing tests. Get a CT, get an MRI. If you end up with a profound loss and want a CI you will have to do those things. What about acoustic reflexes? those are easy to test, have they done that?
 
i understand what you're saying.
yes they have tested my acoustic reflexes and have seen a decrease in them (i don't know what that means?)
as for the MRI/CT, they haven't suggested those yet in my appointments. i'll message my doctor and tell him i want one to see if that will show something...anything at this point that would say why this is happening.
 
HOH33stars said:
i understand what you're saying.
yes they have tested my acoustic reflexes and have seen a decrease in them (i don't know what that means?)
as for the MRI/CT, they haven't suggested those yet in my appointments. i'll message my doctor and tell him i want one to see if that will show something...anything at this point that would say why this is happening.
Click to expand...
There are at least three blood tests that I know that my ENT had done. One was a DNA test (for genetic defects, which I do have, one that can cause early hearing loss, though not sudden), autoimmune and viral, those last two came back negative. Since meneire's is closely linked with hearing loss, and also with the immune/viral issues, among others, those were all done when I first saw my ENT. Usually hearing loss in one ear is common with meneire's and it was not until the hearing in the other ear started to go that he ordered first the CT, then the MRI. Had he ordered an X-ray, he might have also found the ossification that my surgeon found surgery day.
Tell them you want further testing and if they won't, see if they can refer you to a different clinic, surely that will be covered by insurance? You have a right to at least try to find out why and for them to tell you there is nothing they can do without further testing is not good doctoring.
 
JennyB said:
Hey there,

I want to start with telling you a bit of my story...

In one night I lost 30 dB. I waited two days to go see my audiologist, thinking it could just be an ear infection. I saw my audiologist at 9:00 in the morning and she re-tested my hearing. We found it to be severe-profound in both ears.

Jenny
Click to expand...

Scary isn't it? I went from mild to severe overnight in my non-implanted ear. I thought it was just a bad head cold, which I did have. But, the hearing didn't come back. There was fluid behind the eardrum, but that only took a few days to cure. That was last January, and now I am at profound with no speech recognition.
 
instead of constantly looking for cures, i attended my local deafblind center (i was referred there by a pdoc after suffering major depression following my significant drop in hearing) and learned how to successfully cope with my deafness instead of always looking for a way to improve my hearing.
__________________
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Excellent. One wonders if a lot of those people who are constantly searching for cures would be happier if they also learned alternative ways of living with the disabilty.
 
deafdyke said:
Excellent. One wonders if a lot of those people who are constantly searching for cures would be happier if they also learned alternative ways of living with the disabilty.
Click to expand...

that is what people keep telling me here (my doc and audi) which was why i originally said no more testing...but i understand what was said above too so i messaged my doc and am waiting for a reply...
its all just very scary...
 
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