Project: In My Ear

Hubby checked the weather channel to find that there was a predicted winter advisory at 2 p.m. with winds of up to 50 mph and a big drop in temperatures. Should we cancel the appointments? I had three appointments yesterday as part of my cochlear implant (CI) evaluation.

The temperatures were about 40 degrees with conditions of light fog and mist.

When we got to the medical facility, we went straight to the registration desk to verify insurance information and get directions to the radiology department. I was supposed to get a CAT scan. (On a light note: There was no kitty cat staring at me, giving me a “cat scan”)

glitter-graphics.com

(Okay, I guess the cat scan joke is gettin' pretty old, huh?)

That was a weird experience. I had to lie down and sit still. I kept my eyes shut. I felt the bed-like thingy vibrate as it moved me into a tunnel. What a thrill. I think I still like the Demon best. (The Demon was my favorite ride at Six Flags Great America. I don’t know if they still have it, though.) After that was done, I cracked a bad joke about meowing.

Next up: The audiologist (audie). Per my list of providers I was to meet, I was scheduled to see a different audie. I didn’t ask what happened. Maybe the other audie was double-booked or had a day off? Whatever, it was a little unnerving to be talking to a medical professional YOUNGER than me. After growing up seeing doctors here and there, they are all older. Now, it’s reversing.

She asked me if I had any questions. I told her I worked with audies all my life. I didn’t really have any questions, but I was curious about the cochlear implants. She wanted to get on to the audiogram testing and stuff. (I tend to rattle on and on. We still had to do all kinds of testing to even see if I qualified for a CI.) So, Hubby found a really interesting magazine and engrossed himself in that. (Poor Hubby, it was a LOOOOONG afternoon for him.)

I raised my hand at all the high and low sounds I could hear. I got a few things with my left ear (the worse ear), mostly low sounds, but not much. She put the headphones behind my ear to see if I was able to pick up anything that way. I felt vibrations most of the time. I did manage to hear a low sound. Then there were a series of what I call “repeat after me” or "Simon says" tests. The audie read off a list of words and I repeat what I thought she said. There were the usual words I was familiar with, such as “airplane”, “railroad”, ”hot dog”, and “cupcake”. I also had to listen to a recording. A male voice!! Ugh. Any person with hearing loss has difficulties with certain voices, mostly deep male voices. I was warned that I would hear the word “ready” before each word. It went like, ready, coat. ready, calf, and so on. I just had to repeat the word after "ready". Other tests involved sentence repeating with the same male voice and at one point, I had to work with sound effects (noises such as wind blowing, voices in the background, etc.) I didn’t bring my left hearing aid with me. I thought about bringing it with me, but it really didn’t do anything for me. I heard some things, but nothing clear. Bad move. I did need to bring it, but the audie did have a spare for me to use.

With the testing all done, we went back to her office. Hubby was sitting in a chair. He was sooo patient. I felt bad; he must have been soooo bored.

The audie told me the results of my testing. I lost more hearing in both ears since my last audiogram testing. What? In the space of sixteen months, there was another decline!! I was slowly going deaf, even in my good ear. She noted that there was a wee bit of improvement during my testing with both hearing aids. That surprised me, because I didn’t think it helped that much at all, even if it was a small amount.

Compare it to the one I posted here. You can see the difference in the amount of hearing loss. This is surprising because most people with Usher syndrome type 2 have, for the most part, stable hearing-it doesn't really decline that much. Then again, my brother and sister don't seem to lose their hearing at the rate I am. I don't know what it is. Everyone's different, I guess.

Anyway, she said that I was a candidate for a CI. She gave me information about the three different brands of CIs: Advanced Bionics (Harmony), Cochlear Americas (Nucleus Freedom), and Med EL. I never heard of Med EL. It must be fairly new. I was given a comparison sheet on all three brands and warranty information and even insurance information (insuring it under home insurance). I got packets on Med El, Advanced Bionics, and Cochlear America. So far, I know I'd want a behind the ear model because I am used to that. I don't like the idea of a body worn model. Decisions, decisions.

Next up: The ENT (ear, nose and throat doctor or otolaryngologist). He talked about the surgery. I had tons of questions. I did ask how many surgeries did he do and he said he couldn’t count them. There were so many. I asked about which CI brands he worked with most and which seemed to be successful. He pretty much worked with them all.

I asked about infections. There were three infections that they are concerend with the most. One was the infection from the product (internal device), the infection from the incision, and meningitis. (I brough that up.) I must have surprised him about how much I knew about CIs. I've done my homework, plus reading about it from other bloggers who chronicle their journeys. LOL.

While the incidence of meningitis is minimal, they like to have patients get the vaccine two weeks before the surgery. There is also some medicine to take before surgery to up the immunity from other infections from the surgery itself. He said from my CAT scan, the anatomy of my ear is normal. The main reason why the CAT scan is done is to see if there is any abnormalties, especially ossification or extosis. (Another light note: It’s now verified that I do NOT have a high concentration of AIR between my ears!!) Some people who have had meningitis have some ossification in their ears and are more likely to have a recurrent bout with meningitis. I did look, shall we say, “blonde” to say that I thought that once you had meningitis, you didn’t get it again. I guess I was thinking that if there was a vaccine for it, then maybe it was a one time deal. Of course, duh, even the flu vaccine and tetanus vaccine don’t make you immune forever.

We left at around 3:50 p.m. (The appointments took 4 hours!! Poor Hubby.) It was the same-misty with a light fog. Maybe the weather changed? Halfway home, people were driving slower. This is a main freeway with 65 mph limit. We slowed down to 45 mph. It was snowing-the icy, wet kind. It was just weird driving into that. Kind of like a curtain-mist and fog to snow. We ended up extending an extra 10 minutes to our trip home. (Just added this last paragraph to those who may be curious about the winter advisory.)

Those of you with CIs: Bring it on. Please comment and tell me which brand of CI(s) you have and how you like it. I will welcome the feedback I get from you.

Other than that, we have to wait and see if insurance will authorize approval for the CI surgery. After that, I will have another office visit to discuss more details about the surgery. I do have concerns about transportation. I don’t expect Hubby to take time off work all the time or to do so much driving for me. I am still working on the decision whether to have the surgery, too. The big factor here is that my hearing seems to be declining. It would be a matter of time before my good ear would be of no use, either. Then I would be totally deaf. Yikes. Baby steps, baby steps…. breathe, breathe....

Plugged In

I had an appointment with my audie (audiologist).

Before I go on, I want to stress the importance of seeing an audie if you think you have a hearing problem. I do not recommend going to a hearing aid dealer/specialist (to me, they're nothing more than glorified [hearing aid] salespeople working on a commission). Audiologists have the training, the credentials, and advanced knowledge about what hearing aids are right for you. They work with you. I feel more comfortable, too. Sure, hearing aids (HAs) are not cheap. The last ones cost $1200 apiece. HAs have an average lifespan of 5-7 years. The ones I have now are about 5 years old. It gets expensive to get HAs replaced every 5-7 years, but it's worth it.

Here's some interesting facts: Just like fingerprints, every ear is different. What's more, the ear changes its shape every few years-even two years. so sometimes it's necessary to replace the earmold because they don't fit anymore. Otherwise pockets of air get in there and it whistles in your ear (very irriating!), not to mention how damaging it is to the ear.

My hearing dropped since the last time I got new HAs. I am in the process of getting new, more powerful HAs.

I had to get new earmolds for my new HAs. This is common. This was the reason for my appointment.

The audie tied up a small piece of cotton with a string and pushed one gently into each ear. Then she filled each ear canal with a thick, pliant material (think silly putty but more waxy-like). She leaves it to set for about 15 minutes. It feels cool and well, ...there. I don't chew gum that much, but I wished I had some gum to release the plugged in feeling, but then again, that could affect the molding process.

She returns and pulls them out by the sting and then checks each ear for anything that may have gotten stuck in there.

She tells me that my earmolds will be bigger than the ones I have now. This is because my new HAs are going to be more powerful. This helps to avoid the feedback or whistling problems. (I always wondered why some of the hard-of-hearing or deaf people I knew had bigger earmolds than others. I just didn't question it because I thought every audie's specification was different.)

I have a new appointment in three weeks. I will be getting new HAs!! The only downside is that the brain needs to adjust to the new HAs. So things will sound different until it adjusts to it. The sounds I hear are always hollow-like, kind of tinny or metallic. A dropped coin sounds "rattlely." It's pretty much artificial. Most of the time, it only takes about a few days to a week to retrain the brain to get used to the HAs and the sounds.

I will post an update on that once I get the new HAs.