The rollercoaster continues!

[JennyB]

Oh baiscly a Canadian version of Beltone and Miricle Ear?
Is there any way at all that you could get to see someone who is experianced with young dhh folks? I think a big part of the problem, is that your audi is more of a Beltone style audi, rather then a real audi. Maybe a good idea might be to contact a school for the Deaf, or your province's hoh organization. They might have some suggestions as to good audis to see.

Of course it is an option to switch audies but I love this audie! I do know that she did spend some time working in a childrens hospital...again not quite my demographic though. I think I am willing to get past the fact that she doesn't so much deal with young dhh people because she is so willing to learn, and help me. I never have to wait long for an appointment, I can usually be seen same day or within a few days of making it. She replies to emails I send her within the hour. She goes above and beyond what she needs to do, even staying late after clinic hours for a late appointment if need be.

Though it is a big company, her office is small. Only her and the secretary. Although I am sure I can find someone with more experience dealing with young people and my type of hearing loss, I doubt I could find someone who is both more experienced and yet still possess all of the qualities that make me stick with audie. In my eyes having someone that actually cares, and goes out of their way to do as much as possible is better than someone with a little more experience. Like i have said before, as long as she is willing to learn I am willing to help her learn...even if it does make this take a bit longer.

 

[Etoile]

Of course it is an option to switch audies but I love this audie! I do know that she did spend some time working in a childrens hospital...again not quite my demographic though. I think I am willing to get past the fact that she doesn't so much deal with young dhh people because she is so willing to learn, and help me. I never have to wait long for an appointment, I can usually be seen same day or within a few days of making it. She replies to emails I send her within the hour. She goes above and beyond what she needs to do, even staying late after clinic hours for a late appointment if need be.

WOW!! Too bad all doctors aren't like that!

 

[JennyB]

WOW!! Too bad all doctors aren't like that!

I know!! That's why I don't want to give her up!

Today I had my appointment with my ENT. I have been officially diagnosed with a rapidly progressive sensorineural hearing loss (like I didn't know that already) He doesn't know why either. He offered to put me on a week long course of high dose steroids but I decided not too. The risks aren't worth the incredibly minute chance that I will recover any of my hearing. If it were to work too it probably wouldn't be a noticable change for me anyway. And really, do I care if I can kinda, sorta, barely hear 2000hz at 120 db? I don't think so personally. I saw an audie at the hospital too who did another audiogram (I am getting sick of those) and pretty much the same as my last one. I didn't respond to 2000 or higher in either ear, and the lower frequencies were all in the 90-120 range. I had one frequency, I think it was 250hz. in my right ear at 85 which was a bit better than my last test. The audie was bad though. She made me take off my glasses and without my glassess I can see to speech read. She kept trying to talk to me and I kept telling her I couldn't understand her without my glasse, so what did she do? She wrote me a note. If I can't see well enough to speech read, how can she expect me to read a note? Anyway that was frustrating. Then after the testing she tried to tell me that my loss was in the severe range because I tested at 85db on the one frequency. She couldn't even do a speech discrim test, and my SRT was 95. With all of that she argued that it wasn't a profound loss. OOOhh! And with the bone conducted test she told me to tell her if I could feel it, or if I could hear it. So I pressed the button when I could feel it, but I never heard anything. She then tried to tell me that feeling it was the same thing as hearing it. Which it clearly isn't. I know the difference and my audie always makes me ignor it when I can feel it and tell her when I can hear it. I tried to tell this other audie that I could tell the difference but she was insistant that I couldn't. So I argued with her enough that she finally write Vib beside all of the <'s and >'s so that my audie and the doctors would know that I couldn't actually hear it but I felt it. Anyway that was my day...

After all of that I went straight to my audies office. No appointment or anything just to give her a copy of the audiogram from the hospital. She wanted to talk to me while I was there and was on lunch so she took time out of her break to go over the audiogram with me, and talk a bit more about the Naidas. (see what I mean about her being awesome that way?) We just went over stuff, no new info really but now she is up to date and can use todays audiogram to program the Naidas on Monday.

The ENT wants me to go back at the end of April for another test. I don't remember what he called it but apperently it will test my inner ear. I think it was an acronym that started with a 'B' do any of you know what it is? I have been told it will take two hours...just want to know what they are going to do to me before I get there haha. I will ask my audie about it on Monday when I see her. I also don't know if I want to go do more testing. I don't think it will change anything. I have dealt with a lot of medical problems through out my life and I have stumped many doctors who just want to find out why something is happening. The answer to why doesn't change anything, they just want to know. I have already been told that there is no 'why' so far, and if they find one it won't change anything so personally, right now, I don't see the point of this test. I am just sick of doctors and want to focus on school and things that are more important to me right now. I know my hearing should be important but it's not going to come back so why should I still be worrying about it? I would rather invest my time in trying to work with the new aids, and speech therapy, and things that can be worked on. Not doing more tests to find out nothing that will help. That's just me...what do all of you think?

Sorry for the really long post, it was a really long day!

 

[R2D2]

Hi Jenny,

Just a thought. Is your hearing loss likely to decrease further? When you said you were diagnosed with a "rapidly progressive" loss, then when you are checking out the Naidas then one thing you might want to ask the audie is how much room for adjustment do they have if your loss say, got worse 2 years down the track? I don't know how much they cost but I would rather pay money for more powerful hearing aids with fewer features but with potentially longer life than potentially have HAs that you outlive in a short period of time.

Is the test you were asking about perhaps the ABR? Or Balance test?

It sounds like you are so over seeing doctors and having testing! There is nothing wrong with asking for more time if that's how you feel. I think the only thing is with the testing is that you can rule out something that might affect your overall health, e.g. an autoimmune condition for example.

 

[john57]

Hi Jenny,

Just a thought. Is your hearing loss likely to decrease further? When you said you were diagnosed with a "rapidly progressive" loss, then when you are checking out the Naidas then one thing you might want to ask the audie is how much room for adjustment do they have if your loss say, got worse 2 years down the track? I don't know how much they cost but I would rather pay money for more powerful hearing aids with fewer features but with potentially longer life than potentially have HAs that you outlive in a short period of time.

Is the test you were asking about perhaps the ABR? Or Balance test?

It sounds like you are so over seeing doctors and having testing! There is nothing wrong with asking for more time if that's how you feel. I think the only thing is with the testing is that you can rule out something that might affect your overall health, e.g. an autoimmune condition for example.

The Naidas can delivered up to 144db with 85db of gain if I understand correctly and that was pretty much the limit I have seen for the past six years. That can also be a issue with implantable middle ear implants still under investigation and they can run out of headroom if your hearing loses increases. JennyB and I read your Blog and parts of it sounds not fair to what happen to you. Good luck!

 

[JennyB]

JennyB and I read your Blog and parts of it sounds not fair to what happen to you. Good luck!

What do you mean?


I actually have a post in the 'General' board but I actually just found out that my birth father is HOH, one of my birth mothers siblings is Deaf, as is her mother and several of her mothers siblings. With that information I am definatly discontinuing the testing. With that people in my birth family being HOH or Deaf, it is almost surely genetic. I am not going to waste any more of my life doing this testing. I am 18 and need to just get on with my life.

As far as the concern of further loss, yes it is an option for sure. I have been about the same for close to two weeks now, which is the longest I have plateauxed in my hearing for almost 6 months. We are hoping it stops here, if it doesn't...well that's just whats going to happen. No one can say whether or not it will. I am willing to work with what I have for now and if it means 2-3 more months of environmental sounds that is fine with me and worth the investment.

The test was an ABR. I am not going to do it.