And then it was the big day...

Hey y'all!

Well today is the day I get my new aids! I am going to get them in 2 hours and 15 minutes! I have been so excited that I couldn't sleep at all last night! I have never been this excited, or excited at all, about hearing aids in my life! I can barely contain myself! I am trying not to be too excited incase they don't help me but it is so hard!

I had a friend call and cancel my doctors appointments today. No more doctors for me! We shall see what my audiologist says. I have a page worth of defences prepared if necessary! AH! I am too excited to focus on writing anything right now! I will report on the new aids when I get back!

-Jenny

Hey y'all!

Well, it has been decided! No more doctors for me! At least for the time being. I need to focus on stuff that can actually have an impact on all of this, like working to get the most out of the new hearing aids (which I get tomorrow!), finding/working with a good SLP, and bringing my ASL up to speed. I don't need to waste my time with all of these tests, and doctors appointments especially now that I know this is probably genetic. So that is it, I am done. I am going to tell my audiologist at my appointment tomorrow. Hopefully she will go along with my plan. I want to continue to work with her, just no more doctors. We shall see what she says!

-Jenny

And then there was the ENT...

Hey all,

Today I had an appointment with my ENT. I have been officially diagnosed with a rapidly progressive sensorineural hearing loss, I knew this already but a doctor has said it now. He doesn't know why though. 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 audiologist at the hospital too. She 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 audiologist was bad though. She made me take off my glasses and without my glasses I can't see to speech read. She kept trying to talk to me and I kept telling her I couldn't understand her without my glasses, 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. 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 audiologist lets me ignor it when I can feel it and tell her when I can hear it. I tried to tell this other audiologist 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 audiologist 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 audiologists 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 she went over the audiogram with me, and talk a bit more about the Naidas, which I get on Monday. 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. He wants to do a BAER test on me. I 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 have always had a progressive sensorineural hearing loss, this isn't something new. It just progressed a bit faster in recent months. 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 the way I am...anyway that is enough for tonight!

-Jenny

And then there was the day I signed up for ASL...

Hey all!

Today I went to George Brown College and signed up for beginner ASL. I have a feeling the course is going to be a breeze for me because I already know a fair amount of ASL but I am looking forward to being in a completely ASL environment at least once a week. I am yearning for any kind of Deaf culture. Just knowing that the instructor is Deaf makes me excited to go to the class. I need to be around other Deaf people. This should be a good experience and if nothing else get me a little more networked in the Deaf community here! Yay! I am excited!

I was also surprised at how many students I saw wearing hearing aids and/or signing at the school. I can't wait until my class starts! One week tomorrow!

-Jenny

And then there were more problems...

Hi all,

Today I saw a general practitioner at the same clinic as my family doctor. I went to see the doctor because I had a sharp pain in my left ear. I was hoping it would be an ear infection because that would be a nice and simple answer. Of course, the doctor didn't see any sign of infection. She did however see something in my right ear. She said that the entrance to my right ear canal looked red, inflamed, and 'bumpy' and she said it could have been caused by my earmold. Maybe an allergic reaction.

Being allergic to my earmolds is the absolute last thing I need right now! Hopefully my audiologist will be able to tell if I am allergic to them or not soon. I guess possibly needing new earmolds isn't that big of a deal. It's not a time consuming endevour, and my right mold doesn't have a good seal anyway. I sent my audiologist an email and hopefully she will tell me what she thinks I should do tomorrow! I am ready for this all to be over!

-Jenny

And then there was another week...

Hey all,

My audiologist emailed me today and my appointment to fit my new aids isn't until NEXT Monday at 2:00PM. That is a whole week away! I have been in silence for almost two weeks now. I am getting used to it but I am very anxiouse to find out if these aids will work for me. If they do work it would be fantastic! That being said, if they don't lots is going to have to change.

I guess lots is going to have to change anyway. Even if the aids help, I am still going to have a profound hearing loss. The aids aren't going to 'fix' it. I am not looking for a fix. If there was one I would probably do it but only if it was guarenteed. I was offered steroid treatment just after the sudden loss but the ENT doctor told me that the risk was huge compared to the very very minimal chance that I would benefit. He also said it may not be smart with the asthma meds I am on. He left it up to me and I decided right away not to do it.

There is also the option of a CI. My audiologist is setting up an appointment with me to see a cochlear implant audiologist who will do a full assesment of my hearing and discuss my options. I have already decided that at this time I don't want a CI. It just seems really invasive for me at this point. Since I am adjusting to my silent world really well so far I want to wait a while before putting myself through surgery. I would need to make sure it is 100% what I would want to do before I were to do it.

The journey is just beginning and the next scheduled stop is this Friday at the ENT clinic at Toronto General Hospital. Hopefully I will able to stick to the schedule for the remainder of the journey, if not I will take all of the bumps, twists, turns, and even crashes in stride.

-Jenny

And then the speech went...

Hey all,

I was talking to a few people today and I have been told I now have a 'deaf voice'. I wasn't sure if it would happen or not, and clearly it has. I don't know how bad it is yet but I will be seeing my audiologist next week so I will ask her. Whenever I speak to someone I know they give me a funny look and ask me why I am talking funny. It kind of sucks. Oh well...c'est la vie!

-Jenny

Rough day at school...

Hey All,

I go to a small alternative highschool and that means a small tighy knit group of students, right? Wrong!

The other students know I am deaf, they know I wear hearing aids, and they know I don't always respond if they call my name. When I lost the vast majority of my residual hearing a week and a half ago I didn't expect that I would have any problems with my classmates. Yesterday I was sitting in the classroom while we were on break and two of my classmates were sitting near me. Apperently they started talking about me and were talking about how it was funny that I couldn't hear them. It was just stupid and juvanile. The teacher told them to stop, but none the less it is frustrating. I know I shouldn't concern myself with imature individuals but it still hurt me when I was told what they were doing.

-Jenny

A little bit about me...

Hi Everyone!

Well, this is my first blog post! It's kind of exciting!

To start things off I will tell you all a little bit more about me! My name is Jenny, I am 18 years old, and I live in Toronto Ontario. I am currently finishing up high school, working, and figuring out how I want to live my life in the future. To say that I have a busy life is a bit of an understatement. Up until one week ago I spent my time going to high school, taking a course at a Univeristy, taking dance classes, singing in a choir, working at two different jobs, and when I had a free moment hanging out with my friends.

Then one week ago on Wednesday, March 12, 2008 I noticed that there was a sudden drop in the hearing in my left ear. I didn't think much of it at the time, having dealt with cronic ear problems and hearing loss for my whole life. It was some what normal for my hearing to fluctuate because of infection, or pressure changes. The following day I noticed another drop. This one was late at night and did concern me. I had none of the symptoms of an ear infection, perforated ear drum, or pressure changes. I was a little worried at that point but it was late at night and I had an appointment with my audiologist in the morning to make some programming adjustments to my hearing aids.

I woke up on Friday morning and the hearing still hadn't come back. I went to my audiologist and told her what was going on. She first checked my hearing aids and they were fine. She looked in my ear and everything was fine, she tested the pressure and everything was fine. She then suggested that we do a quick tone test in my left ear. She said just with the inserts, no bone conducted test, no test with the head phones, just to see where I was at. So she tested my left ear and then came into the booth and said she was going test my right. She tested my right ear and then came in and said she wanted to test me with the head phones. She tested both my ears, came back in, and said she wanted to do a bone conducted test. She tested both ears, came back in and said she was going to try the bone conducted test while masking my other ear. Very quickly this quick test of just my left ear was turning into a full audiogram. She finished the testing and sat me down and told me not only was my hearing dramatically worse in my left ear, but my right as well. We looked at the change that had occured since my last audiogram, just a month and a half previous. The last audiogram showed a 60-90db loss, the new audiogram showed a 90-120db loss with a few NR's.

My audiologist said she wanted me to see and ENT right away and tried to arrange for me to see one that day. The ENTs that she knew were all on vacation (it was March break so anything with a child was on vacation) Neither Toronto General, or Mount Sinai hospitals had an ENT that I could see, they were all on vacation. My audiologist then told me to see my family doctor and try to get an ENT referral from them. I couldn't get a hold of my family doctor so I went to the hospital that she is based out of, and waited in their urgent care center. It took two hours to be seen by a doctor but when I finally saw one she got me a referral to see an ENT at Sunnybrook Hospital the following Monday, this meant waiting the whole weekend. I talked to my audiologist and told her this. Apperently she then called the ENT and was very firm that he saw me that day. I got an appointment and headed to the hospital right away.

The ENT told me the loss was permanent. He didn't examine me at all and just took what my audiologist said to be true. I trust my audiologist 100%, but the fact that he didn't even examine me, and said it was permanent anyway was unnerving. I went right back to my audiologists office, by now it was 5:00 PM and my first appointment with her was at 9:00AM. She was going to adjust my hearing aids and bump them up as high as she could. My aids are Phonak Savia Arts, they are good aids, but they don't have as much power as I need now. I get only very limited environmental sounds from them. My audiologist ordered me Phonak Naida's that should be in next week. I am very excited to try them! She had also secured me an appointment with and ENT at Toronto General for the 28th. She made this appointment while we were looking for an ENT to see me that day.

On Tuesday, March 18 at about 1:00AM I noticed that there was a warm sensation in my left ear, and then the tone of my tinnitus changed. After the sudden hearing loss my audiologist made me promise that if anything else happened I would get it checked out right away. Not wanting to deal with the wrath of my audiologist, I went to Toronto General at 2:00AM. I had my friend call ahead to let them know a Deaf person would be coming in. I got there and signed the sign in sheet and went to wait. I spent 5 hours in that ER waiting to see a doctor. I dealt with a nurse who wouldn't look at me when she spoke, another nurse who accused me of ignoring her, and a drunk man freaking out at me. All in all it was a wonderful experience. I finally saw a doctor after 5 hours and he said he didn't know what was happening, there were no signs of infection and he wanted me to see an ENT. I waited another two hours to see an ENT resident who said there was nothing he could do and to go home. I emailed my audiologist and told her what had happened. She wanted me to come in that afternoon to make some programming adjustments to my hearing aids, so I went home, slept, and then went to see my audiologist.

We made some quick adjustments to my hearing aids and then she said she wanted to do another quick test, just my left ear with the inserts (where have I heard that before?!?!) The situation played out much like the one on the previouse Friday and it quickly became a full audiogram. This time she even decided she wanted to do a speech discrimination test too. The last one I had done was on January 25, 2008. I had got 84% at 105db. I got 0% on Monday.
The new audiogram revealed aother 10db of loss, putting me at a 90-120db loss still but with many many more NR's.

We don't know if it will drop more, there is no way of telling because we don't know why it is happening. I have an appointment with a cochlear implant audiologist, another ENT, and many more appointments with my audiologist coming up. It is going to be a busy few weeks while I decide what to do....and that's me!

-Jenny