Monday, September 15, 2008

A Year in Review - CI Scores

There, I was today at the Audiology Department of the Hospital University of Pennsylvania, sitting cross legged in the same chair that I sat in 364 days ago when I had my cochlear implant activated. Time is a funny conundrum of sorts because some people claim it is relative, others absolute but the fact of the matter is that it just – flies. My temperament was flickering with nostalgic moments of how just a day shy of a year ago I was reintroduced to the noisy world of sound. I still remember how I wanted to commit mass genocide of anything with the consistency of paper. I remember trying to harbor laughter when anyone – man, woman and child spoke to me as if they were practicing to become an extra in an Alvin and the Chipmunk movie. I remember how a helicopter dangled fifty feet above my head and heard not a thing. I remember my emotions running amok – one day I was on a high, the next I was depressed and one-second I would be savoring a sweet melody and the next I would frown at gosh awful noise. I remember my eye twitching because I was too hasty with my volume and I praise the day it was resolved. I remember people telling me to be patient and that I will eventually reap what has been sewn in my head. I remember all of tedious and trivial details as if it were yesterday and yet I can’t remember what I had for breakfast this morning.

It has been a while since I had a mapping, seven months to be exact. I have developed quite a few gripes over the past couple of months. I have completely maxed out on my volume. I still have the utmost difficulty understanding men and some women. I can understand women with no problem but that can be a bad thing because I understand them too well sometimes. When a man says bosom, it sounds like booze. When a woman says thirteen sounds like fifteen and vice versa. I used to be able to hear the airplanes from in the house and now I can't which is disturbing because I live right near a military base and there are constantly flying overhead. I used to be able to hear better in noisy conditions but I think that is due to my CI needing a tune up badly. Edelweiss sounds like anal rice or anal vice depending on who is saying it and lip reading doesn't help me in the least little bit. I walked in and plopped down and unleashed my tiny list of tasks to be tinkered to my dear audiologist.

Right off the bat, she raised my volume which was a dire improvement. With raising the volume, she raised distortion also. She flattened the lows and tweaked the high frequencies. I was able to hear the sizzle of the S’s and rushing air of the SH sound. It sounded nice and crisp. Amazing what just a little bit of tweaking can do. I am happy to report that Edelweiss now sounds like idle vice which is a drastic improvement over anal rice. Whew! It was time to go into the booth!




You will graphically see as I provided that when I was tested for CI, I bombed every single test with my left ear – zero’s across the board. Quite pathetic I know but what did you expect from an ear with no stimulation for over 15 years.

A month after my CI activation, I was plopped in the soundproof jail and I scored an average 44% on sentences in quiet. The harder test is the words which I scored 8% on, but I managed to score 33% on the phonemes. I get points for phonemes because that means I was able to guess part of the word. For example, the man in the speaker said tick and I said kick – I get points for ick. :)

Five months after activation, I got stuck in the jail again and I scored an average of 79% in sentences in quiet which was well – a 79% improvement. :) My audiologist Jennifer decided that I progressed enough to do the HINT (Hearing in Noise Test) test. She gave me the +10 HINT which means the voices was raised 10dB above the noise and I scored a pathetic 34% on that. Now my one year mapping results – I scored 79% on the sentences in quiet which is not a major improvement from my last test, but I was never one of those people that was aiming for 100% because all I wanted to was to hear something. I feel that I perform much better in real life and the following tests scores prove that. These are the result of the +10 Hint – 74% which is a great improvement from my last score of 34%. My audiologist decided to give me the hardest test – the +5 HINT test which means the voices is raised 5dB above the noise and I scored – 65% :)

Some of you might go, you went through surgery and got your head cut open and you can’t even get over 80% comprehension in quiet! When it comes down to it, I didn’t get the cochlear implant to hit hundred percent in a soundproof booth; I got it to gain anything over zero percent. I was happy with the 44% a month after activation and I am happy with 80% now. However, in all actuality these test scores do not reflect how I feel that I perform in real life. I can see how well I perform just by what I am picking up.

Patience is a beautiful thing when you have it and you definitely need it with a cochlear implant. I got 364 days of certifiable cochlear implant experience notched in my head and I can’t wait to see what tomorrow and the next day brings to me. Each tick of the clock leads to a more enjoyable experience. Put it this way, getting a cochlear implant is like making a fruitcake – it Is a lot of hard work but the longer it sits, the better it is and my bionic fruitcake has gotten better and better with time! :)

18 comments:

jensmessystudio said...

WOW that's amazing about the test result!! I'm still struggling with voices and words -- but it's only been a month (this Friday). I noticed I had keep turning down the volume on the hi res... it's quite too loud for me to the point where I feel like I'm trying to crawl out of my head!! Thankfully I have an appt tmw (another mapping).

elizabeth said...

Wow, Abbie! For what it's worth, I am SO proud of you! Look how much you've accomplished in just one short year... could you ever have imagined how much your life would change?

Loreene said...

Way to go, Abbie! Your hearing in noise has dramatically improved and you're doing well with words too.

Valerie said...

Amen! What I realize is it is an going progress for sound not to hit that 100% comprehension. We went so long struggling with comprehension, it is so "nice" to not have to put the effort into understanding. Remember what I asked your yesterday, what does the cochlear implant give you? To me it completes my life. It allows me to understand my child and keep doing my career. For the first time in my life, I feel as if my ears are a part of me, not my life about my ears. (hope that makes sense)

Love ya Bonic Buddy, sorry so out of it. It has been a stressful few weeks. I'm not myself.

Valerie

Sam said...

Abbie...that is so absolutely awesome and the improvements will continue! And when you finally go bilateral, you're going to fully appreciate it. I am thrilled and honored to have known you the past year and I look forward to many wonderful adventures in the Land of CIs!

Vivie said...

it sure seems amazing..

I cracked up again with 'anal rice' and with 'anal vice'..you're close though!!

Can't wait for the yearlong mark! Sometimes feels so far long! I'm closing the 4 month mark now..

Laura's medical journey said...

looks like you are well on your way! I agree you do need patience with the CI! im glad you are enjoying your experience with it and hope it continues into the future! We always know we will never have 100 percent hearing but just hearing something means more! :D x

Dave said...

Happy one year, and thanks for mentoring me through so much of my questions and ordeals in my 4 months to date.

David

Laurie said...

*dancing in circles with you* Abbie, you are doing awesome! I'm so proud of you, girl! It will only get better. . . keep up the good work and never give up.

Shari/"Whiger" said...

LOL, the jail. I am stil hanging around with Alvin and the Chipmunks here. I turn my hearing aid off and on all day to really listen with the CI. Patience, patience, patience. That ear's been pretty useless for about 10-15 years.

BTW, I was using the phone with my hearing aid ear. The CI ear isn't that acclimated yet. Hopefully someday....better sooner than later. Oops. Gotta be patient...

Charlotte said...

Hi Abbie, I got your message on my blog, thank you.

Your progress sounds amazing!! I hope that we could do the graph thing next year on my one year map.

I have now added you as link on my blog :-) x

Sheila said...

Oh, Abbie, the rewards of patience and practice!! You are such an inspiration to so many who just need a word of encouragement from someone who's been there.

Debbie/Steve said...

That's so AWESOME and you have made an achievement in a long run. When you become bionic once again, the two would blended so beautifully, I'm sure.

latedeafened said...

AWESOME test results, Abbie! I hope I do as well a year after my activation.

Ulf said...

It is so inspiring to read your experiences, Abbie. Especially since I'm in a rough spot myself these days. I find your blog refreshing and encouraging. Your ANALogy about the "Anal rice" really made me crack ;-)
Anyway, wanted to pay my respects on your blog today, since I got down to reflect little on my own, and while doing that, I realized just how many encouraging comments you have made on my blog!
I am grateful we found each other in the blog-o-sphere, my life is better because of you!
Your experiences fills me with optimism and great expectations about the year ahead of me...
Thank you for YOU, Abbie!!!

Many warm hugs from your number one fan in Norway!

Sarah C said...

It's so encouraging to read your experience and know that it will be better in the future. I was activated just three days ago and am really struggling with hearing so little compared to before and it's heart breaking just hearing high pitched birds in my ear at the moment but 'ss' and 'ssh' is clear and I haven't heard those sounds in years. Patience and perseverance is all I'm hearing at the moment - driving me mad! However, Anal vice instead of Edelweiss is hilarious - those little giggles make for a funny day don't they? If you'd like to read more, my blog is Sarah's Cochlear Implant.. Thanks again..

*Tasha* said...

Ahh, I wrote a comment but it got erased! :(

Basically, that is wonderful. 0 to ANYTHING is incredible and truly says something about your effort and also about the scientific marvel that is the CI.

Congrats! :)

amb458 said...

Hi Abbie, I just started reading through your blogs and find it totally fascinating (& humorous at times). I am scheduled for my CI surgery on November 20th at NYU and I'm having such mixed feelings that I thought reaching out to others would help. I'm so worried that the CI won't work for me and I'd be worse off(not much) than I am now with hearing aids. The surgeon told me that from the CT scans he believes I have otospongiosis or otosclerosis (one in the same?) of the cochlear bone. My worry is that a CI may not be an effective remedy to my hearing loss because of this. Do you (or anyone out there) know anything about this condition, or do you know anyone who has this condition and has the CI? I'd appreciate any response, any encouragement, any truth there is about it. It's so hard to make a decision to go forward not knowing enough about what the outcome may be. I've been searching the net for definitions, descriptions and the relationship between otospongiosis and CI's and how effective the CI is under these conditions, but what I'm finding is limited. PLEASE HELP!
Thanks to anyone, everyone in advance.
Andrea