The Bionic Sound Project

this girl’s journey to sound

Evaluation with the Speech Therapist Friday, June 23, 2006

Today I met with Susan, the hospital’s speech therapist, to undergo the speech part of the CI evaluation.

When we arrived at the hospital, there was a crime scene bus, a police car, and the coroner’s van parked in the circle outside the main entrance. I was wondering what was going on, and was teasing my mom that it was like a episode of Law&Order. I was nervous going in there, because I had never been to that hospital (Desert Sam) and the directions on where to meet her were complicated. The other part of it was that my experience with speech therapists in the past has usually not been good (save for a few gems), so I was dreading going to the appointment. Mom reassured me that she sounded very nice over the phone, but experience leads me to be distrustful.

Susan was waiting for me at the Physical Therapy admissions counter, and after standing there for a few moments waiting to register, she turned to me and asked if I was meeting with her. She also had a graduate student “shadowing” her today, who also did some testing. We did the usual battery of speech-stuff, and I did extremely well on all of them, and they both were impressed with how well I have done with my hearing loss.

The speech tests help determine how well I can speak and understand words. The results helped her to figure where we would need to start in therapy, post-surgically. I won’t have to start at the very bottom of the ladder, but will be more towards intermediate training, because of my comprehension.

The whole experience left me feeling positive, because she was absolutely awesome. I am so happy that I can have her (and Karen) as my therapists, and now I have one for home and school. It’s a relief to know I have a team set up in both states, ready to deal with me after the surgery and help me learn to make the most of my implant.

 

Advanced Bionics vs. Cochlear Americas Thursday, June 22, 2006

Needing to make a decision between Advanced Bionics and Cochlear Americas. So far I’m leaning towards Advanced Bionics, because I had decided on that back on March 13, 2005…So, as a result of the information that I’ve gathered (correct me if I’m wrong on anything)

HiResolution BionicEar System – PROS
– has one electrode array without a positioner (Freedom has a positioner…and the CDC has talked about an increased risk of meningitis in children post-implant with positioners, but this was in reference to pre-2002 implants made by AB)
– fires multiple electrodes at once (Freedom fires one at a time)
– reportedly better with music quality/tones (super important to me)
– batteries are the most-cost effective ones in the industry, and I’m a bit of an environmentalist, so this makes me happy.
– if i go river rafting or away from civilization, I can switch to an AA-battery which will provide power for 1.5 days (with the Power-Pak). For me, AA batteries are cheaper and easier to find than hearing aid batteries.

HiResolution Bionic Ear System – CONS
– the one major con is that the reliability can be of some issue as compared to Cochlear (~1% of implants fail)…but if it fails, AB will pay for replacement.
– not splash-proof (big negative, i love water!)
– not as many “extras” in terms of accessories (in my opinion)
– Cochlear seems more deaf-centric than AB (as in they understand their needs better)
– battery life is short compared to Freedom (will have to recharge it daily, and change battery twice a day with the 8-hour batteries)

The major reason I think I am going to go with AB – the sound quality. It seems like the audiologists/doctors that I have seen/talked to in both states have suggested that Advanced Bionics would be a better match for me.

Another important thing to note, Advanced Bionics has a new 120-channel processor coming out in November 2006 (hopefully). I did a search on this and found a beta tester’s journal about their experience with the 120-channel processor as compared to the Auria. They said that they were sad they had to give it back, and couldn’t wait for it to come out.

However, there is something to be said for the company (Cochlear) that was one of the pioneers of the cochlear implant, and also has the highest-number of implantees in the United States. They really laid the groundwork for all of it, so I give applause to them, and thanks for getting the ball rolling.

There is a third implant company called Med-El, but it is not for me.

Everybody has to do their own research and make their own decisions, but I think Advanced Bionics is going to be mine for sure.

 

Audiological testing and a curveball has been thrown into the plans

Oh. My. GOSH. Talk about a total curveball in your plans. They’ve moved up my CI date to the 10th or the 12th instead of the 26th.

I met with Megan today (the audiologist) and she gave me some hearing tests that I hadn’t had at school (specifically, the HINT test, among some others). For me, the results were shocking, and in a way, a real eye-opener.

11% on sentences spoken in a noisy environment, no lip-reading.
24% on sentences spoken in a non-noisy environment, no lip-reading.
08% on words spoken in a non-noisy environment, no lip-reading.
100% on sentences spoken with lip-reading in a quiet environment.

The words that I got right? The, and, of, (and so on) consistently. That is what makes up the 11%/24%. And one word…I think it was something like “watched”.

All I have to say to this is that some of my friends will remember the “bastard pony” misunderstanding from my recent birthday party. The results of these tests are a perfect example of how I can hear speech but not understand what is being said.

The basic fact remains that I, without any source of lipreading, am DEAF. I will continue to be deaf even after the implant, but hopefully we can bump up my comprehension level to that of a hard-of-hearing person or better. I can play the part of understanding everything, but I am not hearing and understanding everything that is being said. I hate group conversations with friends or family, because I can’t follow everything, and people don’t slow down or look at me to help me to understand. This is why I space out a lot, because my brain gets tired from trying to fill in the missing words and to understand what is being said. That’s why I feel left out or not a part of things a lot.

So with the results of those tests, along with some big questions that were answered today, I am basically an excellent candidate for the CI. At this point in time, I am definitely a GO for surgery (except for the clearance from the hematologist). I can’t wait to get it, but at the same time, I am scared to death, because my life as I know it will change. What I used to know as sound in the world will be opened up to greater heights. Some things I will have to do differently, won’t be able to do, or ever get a chance to try (metal detectors, MRIs, scuba diving). That, and having a hole drilled into your head is scary enough.

The other thing that was mentioned today was that my surgeon has had several patients who have come back after surgery and were able to wear a hearing aid because their residual hearing wasn’t destroyed! The reason for this is because the implant didn’t go past the apex of the cochlea, so those low-frequency cells were still present. There is no guarantee that will be the case with me, but let’s hope that I will have some low frequency hearing after surgery, because that will help in an environment without my hearing aids.

So yeah, two weeks till surgery. I still have three more appointments to do: speech therapist, hematologist, and then my pre-surgery appointment.

Bring it on.

 

Surgery Scheduling Woes Tuesday, June 20, 2006

My cochlear implant surgery was tentatively scheduled for the 19th, but now has been pushed to the 26th of July, unless if they get a cancellation. *sigh* Apparently, my doctor is going out of town that weekend now, and will not do surgery on patients unless he’s around to follow up.

I can understand the reasons why he won’t do surgery, because he has a 0% infection rate with his patients. The reason for this is because he keeps them in the hospital for 23 hours after surgery, on IV antibiotics, to reduce the risk of infection/meningitis. Plus, there is a potential that I might have to stay for longer than 23 hours because of the bleeding disorder.

What this all means is that I won’t get activated until right before I return to school (need 4 weeks to heal, he prefers 6 weeks). As it stands, I may end up flying back to school instead of driving back, due to the time constraints. I may not see my car till later on in the fall quarter (boo!).

I’m excited but also scared to death at the same time of getting an implant. I want to talk to some of my friends who have gotten one and see how they are feeling about theirs now/the decision that they have made.

 

Imaging Tests Of The Head Tuesday, June 13, 2006

Today I had my CT and MRI at 11:45 am.

I started off with a “CT of the temporal bones, no contrast, axial and coronal”. That was short and fast, nothing to it.

I was then led out into the little waiting area, where I had to wait for the guy to come out and take me for my MRI. 10 minutes later, he was there, and we were talking about what we were going to do today, which was a “MRI with and without gadolinium of internal auditory canals and posterior cranial fossa”. He was curious about the CI, so I had to explain it to him and he was asking me all these questions about it. After we went through everything for the procedure, the realization of what he said really struck me…“Are you ready for your very last MRI ever?”

edit 1: I had to cancel my follow-up audiological appointment with Megan on the 14th, because I was sick from the Gadolinium injection. Rescheduled to the 22nd.

edit 2: I got a thank you card from him a few days later, with a personal note inscribed in it, hoping for the very best with my implant and that I would do very well with it. I have never seen such a kind and thoughtful gesture from a diagnostic testing place, especially somebody that I will probably never see again. So that was an “awww” moment for me.

 

Canceling my first audiologist appointment. Monday, June 12, 2006

This morning I spent nearly 5 hours at the hematologist with my mom. I was grumpy after being there for way longer than expected, and then became disappointed because I had to cancel my audiologist appointment. I was looking forward to talking with Megan, plus getting the ball rolling with the process of getting the OK for the CI.

I have to go back next week to the hematologist because they want to run some tests on me for the bleeding disorder. I am not looking forward to it, because the last time I was there and they drew blood, I threw up and almost passed out. How embarrassing.

Tomorrow I get a CT scan and a MRI of my temporal bones (otherwise known as one of the bones of the skull, so they can see the structure of my cochlea/head).
Wednesday I meet with the audiologist and get the HINT test and some other ones.

And then the last thing I have to do is to set up an appointment with the speech pathologist from the hospital.

 

Meeting The Doctor Friday, June 9, 2006

Today I met with the CI surgeon for the first time ever, to talk about the implant.

He seems really nice, and I am comfortable with him. I also met Megan, the audiologist, who came in as an interpreter. I was totally surprised, because I wasn’t expecting an interpreter in the doctor’s office. But she works there as an audiologist, and also knows sign language.

Both of them are very nice, as well as everybody else at the office that I met (except for the other audiologist, who wasn’t there). He did an examination of my ear, and physically, I look good for surgery, but I still have to do audiological testing (since my last test was more than a year old, and insurance companies want current test results). I also have to get an MRI and a CT scan as soon as possible. I also need to get clearance from the hematologist, because he won’t do surgery without his okay. They said that if everything checks out okay, I can get the surgery on the 19th of July.

I’m just a little stressed with mom’s upcoming surgery and being her nurse, and working it in with work, because in the past, my hours have been all over the place, with no consistency, plus the schedule is only 2 weeks in advance. This is going to be a challenge, because so many things are unknown right now.