Hello everyone xXx

Timothy's Mum

New Member
Thank you.... I never like to Google to find things out as I feel, sometimes, examples are complicated. Would like to know, what may be going on though & from people that may be going through the same thing xXx
 

deafdyke

Well-Known Member
That's ok, do you have any ideas on the narrowing & the curve? When I go see the ENT, I would like to know a little, thank you xXx

*you called?* The condition is called stenosis/atresia. Meaning very narrow/non existent ear canals.
That is what I have. It's seen sometimes in isolation (but VERY VERY VERY rare) but is also the cause of the hearing loss in Treacher Collins and 18q- syndrome. (a chromosome abornality where there's a hunk missing from the end of the 18th chromosome)
 

deafdyke

Well-Known Member
Oh and I just wanted to say....if he DOES turn out to be HOH, look into a partial hearing unit or a deaf school....see what's available in your area.
Thing is, the doc is just going to refer you guys to an audi. Dhh doc stuff is NOT all that complicated or complex. It's basicly just referring to an audi...and then if you want to find out the cause of the loss, further tests may be warrented.
 

Anij

Well-Known Member
Most school screening are just that - very basic 5min tests often NOT performed by a lisensed Aud. Audiologist (rather a volunteer parent, or a school/division/district hoh/deaf co-ordinator etc).

These tests are almost useless ... They're done in an open room, with headphone and a portable testing machine where they test a few tones per ear and call it a day. The reason they aren't often able to give results is they aren't actually legally allowed to because the test wasn't performed by an actual AuD. (so they aren't actually allow to give any numbers etc, because their often very wrong).

I'm competely deaf on my right side +120db loss ... And I was able to "pass" the school hearing tests for years .... I just watched when they pressed their button and then raised my hand ;)

Really, it's very very important that you push to have him properly evaluated by a proper AuD. (Audiologist with a doctorate or more in audiology). Keep signing with him, and perhaps consider taking some additional classes because it can do not harm whatso ever, but can be a great help.
Also, make sure when you talk to him that you face him, do call from other rooms etc, or turn your back when you talk.

Once he goes for a prper audiogram, demand a copy of the results (you have a right to them!) So that you can see exactly what is going on (we can help you read them)

HTH
 

Timothy's Mum

New Member
I am still waiting for the ENT people to get in touch, I have phoned the hospital but with no luck we have to wait in the que..... The teacher is now sitting him in front of her when she talks & makes sure he can read her lips.
Deafdyke, I tried to send you a message but it would not let me.... I understand from my daughter that dogs & cats have curved ear cancels but humans are meant to have straight..... Could you hear when you were born & is there a chance in your experience that it's going to get worse, as his body is going to grow (he's five) isn't the inside of the ear supposed to grow with him & could that be why his hearing is getting worse? Also how rare is this condition? xXx
 

DeafCaroline

New Member
I am still waiting for the ENT people to get in touch, I have phoned the hospital but with no luck we have to wait in the que..... The teacher is now sitting him in front of her when she talks & makes sure he can read her lips.
Deafdyke, I tried to send you a message but it would not let me.... I understand from my daughter that dogs & cats have curved ear cancels but humans are meant to have straight..... Could you hear when you were born & is there a chance in your experience that it's going to get worse, as his body is going to grow (he's five) isn't the inside of the ear supposed to grow with him & could that be why his hearing is getting worse? xXx

Its better that you ask your ENT about these things as they are the ones who are actually taking a look at your son's ears to make a medical diagnosis of his hearing conditions. None of us here has ever met your son and none of us are doctors. At this point, any answers we give would be pure speculation and nothing more.
 

Timothy's Mum

New Member
Yes I understand that & thank you..... I just feel so helpless & it seems to be taking so long...... I do not want to go in there with nothing as I find people tend to fob me off..... I am not saying that is what is going on & I will not look it up as the internet I think just makes matters worse..... I have no idea about the narrowing of the ear passage & it being curved but that has been noted by the Doctor & I would like to know a little more from people that are living with hearing problems or that are deaf xXx
 

deafdyke

Well-Known Member
I am still waiting for the ENT people to get in touch, I have phoned the hospital but with no luck we have to wait in the que..... The teacher is now sitting him in front of her when she talks & makes sure he can read her lips.
Deafdyke, I tried to send you a message but it would not let me.... I understand from my daughter that dogs & cats have curved ear cancels but humans are meant to have straight..... Could you hear when you were born & is there a chance in your experience that it's going to get worse, as his body is going to grow (he's five) isn't the inside of the ear supposed to grow with him & could that be why his hearing is getting worse? Also how rare is this condition? xXx

Well the condition is a HOH condition. Meaning we can hear somewhat. We're not totally deaf. I remember I fooled the docs at Children's Hospital.
Atresia/stenosis isn't progressive although we can go deaf if we have a cold or whatever.
 
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