The CI Assessment
For some reason, I’m nervous this time. I guess it’s because I really don’t know what to expect from a CI evaluation. I’m not sure who will be there, what they’ll ask, what tests they’ll do. Will a psychologist evaluate me? How long will the hearing tests be?
I’ve always hated hearing exams and eye exams. I feel like I’m failing them. My eyesight is bad (-9.0 in both eyes, nearsighted) but it’s been stable for a long time. Still though, hearing tests are worse because at least with an eye exam you eventually get to a point where you can see the chart and you feel like you’ve succeeded. There’s never success for me with a hearing test!
We go into the office and wait for a while in the waiting room. There’s just one other couple there, and when someone comes out to get them and they both stand up, I realize the woman has an Advanced Bionics CI. The lady who greets them gives the woman a big hug and shakes the man’s hand. I wonder who she is…maybe the woman’s audiologist?
The lady who comes to get me is a new face – she’s not someone I’ve seen before. (My other two hearing tests were each administered by a different audiologist.) She has a younger woman with her, probably in her twenties. I don’t catch her name but I think she’s in training. My audiologist, Kathy (or Kathleen – that’s how it’s listed in her email but I think she introduced herself as Kathy) seems to be about my age or a bit younger. It’s still a little weird for me to have doctors and other medical professionals who are younger than me! 🙂
She brings me and Dave back to a room, we all have a seat and begin to talk. I’m relieved that she’s easy to lip-read. I realize I’ve been pretty nervous about the fact that this visit is so information-packed and it’s really not information that I want to miss. I wasn’t sure how much I’d really catch, doing 100% lip reading. The hardest part is probably when she’s explaining how the CI works, flipping through a book with diagrams. I have to look at her lips to understand what she’s saying, but then I can’t really look at where she’s pointing to or examine the diagram very much. Luckily I feel pretty well-versed already in how the CI works from the research I’ve been doing.
The first thing Kathy asks is about my recent hearing loss – was it very sudden, what exactly happened? We then talk about the initial cause of my hearing loss (which isn’t known) and my theory that it may be genetic rather than caused by the high fever I had as a toddler with roseola. Kathy points out that it could be a combination of the fever and a genetic factor. I ask about erythromycin, because I’ve read that it is ototoxic. I’m allergic to penicillin and that’s the only medication I ever took as a kid and young adult. However, I would have had to have been taking some pretty high doses for a long time, apparently, and that’s not the case.
After this short discussion, they ask if I’ve gotten new hearing aids since my most recent loss. I tell them no; ironically, I had been considering buying new hearing aids this year since the pair I’m wearing are 15 years old and starting to fall apart. I was hesitating because of the high cost…now I’m really, really glad I didn’t spend $5,000 or more on a new pair of hearing aids just to go deaf a couple of months later. LOL!
So they tell me they’re going provide the strongest hearing aids available for me to use during the upcoming hearing test. I get a little excited – cool! I wonder if I’ll be able to hear anything with these? If I do, I wonder if I’ll get to keep them for a while…kind of a trial basis thing or something. They go in and out of the room with the aids, which are gray and much slimmer than my beige Beltones, but still behind-the-ear style. I give them my hearing aids and they put the new hearing aids on with my ear molds. They put the left one in my ear and turn it on and…oh my gosh. My whole head is vibrating. It feels like my eyes are spinning around in my head. I don’t hear anything, it’s just this head-shattering vibrating. I say, “Woah!” and they look concerned right away. They ask what’s wrong and I explain to them what it feels like. I’m starting to feel nauseated from the dizziness. I guess there’s major feedback from the hearing aid, so they quickly remove it and use these foam ear pieces instead of my ear molds. They squeeze them and stick them in my ears, then try the hearing aids again. Same result.
More going back and forth from the room for a while, then they apologize and say that they know it’s uncomfortable, but they have to do the test with the hearing aids. They promise me they will try not to talk very much, and ask if I can just hang in there for the test. Of course I say okay – I’m the most non-confrontational person you’ll ever meet! It’s a little better and at least I can walk without feeling like I’m spinning around. I think they’ve lowered the volume a bit. I just have to close my eyes when someone talks and my head starts to vibrate.
The hearing test is the usual – I’m in a booth, and I’m told to squeeze the button when I hear anything. Then I’ll hear a man’s voice reciting words; just say whatever I think the word is, if I hear anything at all. I ask what to do if I just feel the vibration instead of hearing it. They tell me to just let them know that I can feel it. Well, that ends up being really annoying. I wish I’d had one button to push if I heard the sound and one to push if I just felt the vibration. It turns out that I don’t hear anything, although I do push the button twice for my right ear. It’s hard to tell if I’m hearing or my head is just vibrating so much that I think I’m hearing something. For all of the other things I can sense, I end up saying “I feel that.” Every time I say this, my head is shattering from the vibration in the hearing aids. It’s exhausting and frustrating.
I can tell when the word recognition part starts because instead of a short vibration, I get longer sentence-like vibrations. I have absolutely no idea what’s being said; I hear nothing. I just feel my head rattling around.
They do three tests: one with both hearing aids in, then one with just the left aid in and one with just the right aid in. Finally it’s over…thank God. I don’t think it took very long…it felt like 10 or 15 minutes to me but Dave said he thinks it was more like 20 to 25 minutes.
We all meet back in the room and Kathy tells me that yes, I would be a candidate for a cochlear implant. She says that my MRI didn’t show any problems; that my left side looked “a little better” than the right, although I didn’t catch what she meant by that. She talked a bit about the auditory nerve and I did have her repeat that to make sure I caught everything.
This was the point where she took out the binder and explained how the CI works. Then she pulled out a couple of briefcases and showed us the parts of the CI’s from each company that they work with: Cochlear and Advanced Bionics. I held each sound processor, tried it on my ear and played around with the controls. She showed us the actual implant – it was absolutely amazing how small the part that goes into the cochlea is! It was much, much smaller than I imagined. We got to hold the implant and marvel over it – Dave really liked that part. He’s much more ‘techie’ than I am!
Of course, Kathy was very neutral regarding the two companies and said they both have very good results. We talked about the meningitis vaccine and a little bit about the surgery. She went over the various accessories for each CI and showed me how the batteries come off and the different battery options for each brand. We talked a bit about expectations, and the mapping process after the CI is activated. I asked if I would be returning to that office for mappings and she said yes, which was good news since it’s not too far from our house. (It’s about a 30 to 45 minute drive, depending on traffic.)
We also talked about bilateral implants. I was surprised that this wasn’t something she strongly recommended; she seemed kind of laid back about it when we asked. She did say there were studies that showed a real benefit to bilateral implants and that I would definitely benefit since I can’t hear with a hearing aid in either ear. I think the simultaneous bilateral CI surgery is still kind of new and I suspect a lot of people don’t opt for it. I’m sure it’s harder to get insurance approval for it too. Still though, I’m used to the semblance of hearing from each ear since I was wearing bi-CROS hearing aids. If my aids needed repair and I had to just wear one in my “good” ear (in the past), it drove me crazy because the sound was all wrong and I really missed a lot. I’m assuming bilateral CI’s would give me the same “surround sound” effect so even with the extra recovery time, it’s still something I’m interested in if the insurance approves it.
The whole visit took about 2-1/2 hours and I came away from it feeling pretty good about things. Since I already have big information packets from each company, I didn’t get company-specific paperwork. I did get some forms though, explaining the meningitis vaccine, basics on what to expect from a CI, and the cost (good grief, it’s more than double what I thought it cost just for one CI…the thought of what it costs for two is kind of frightening).
Kathy gets my email address and tells me she’ll keep in touch via email, which I’m so grateful for. Right now I have Dave doing all the phone calls for me, which I’m sure he’s not crazy about (although he never complains). She says that the next step is for her to write a letter to the insurance company for the pre-approval. She’s going to go ahead and request bilateral implants. She tells us to find out who the contact person at the insurance company is and bug them. This is not something I’m likely to do, being non-confrontational like I am, but I’m also used to dealing with insurance companies since I did it for my job when I worked in Human Resources a number of years ago. I can do it if I have to!
After we get home, Kathy emails later in the afternoon and says the doctor would like me to come in for a visit so we can talk about the difference in recovery time, etc. for bilateral surgery. I have a lot of questions about the surgery for him anyway, so I’m kind of glad. We’re going for that appointment on May 16 (this coming Friday).
So now we wait for pre-approval and I have to make a decision on which company to go with. I have to thank everyone, once again, who replied on my earlier post. I know this is a really new blog and it isn’t very visible yet, so I wasn’t sure how much feedback I would get. I was pleasantly surprised! I’m so happy that you all took the time to write and give me your experience and thoughts on the CI’s that you have.
I think right now more than anything, I’m concerned about money. Since I pay for my own health insurance, I have a very high $5,000 deductible. I also just switched to this company this January (my other company was raising the monthly premium again and it was just becoming unaffordable). So here I am, a new member of just 5 months and I’m requesting this majorly expensive surgery! I have no idea what to expect and whether they’ll approve it. Even if they do, our out-of-pocket expenses will be astronomical. And if I get two CI’s, I’ll have the cost of upkeep and, eventually, upgrades for two CI’s instead of one. On the other hand, if the bilateral surgery gets approved it seems stupid to pass it by just because it’s more expensive to have two CI’s versus one. I figure we’ll find a way to pay for it—we always do!
To look on the bright side, the company I switched to does often approve CI’s. And at least I have insurance – I had been very tempted to just go without health insurance for a while to save money on the monthly premiums. I am really glad I didn’t end up doing that!! I know I’m lucky to even be in a position to consider getting CI’s so I’m not going to complain.
Finally, my last concern is that I’m going to have really bad vertigo if I have bilateral surgery. I’ll have to ask the doctor if that’s more of a possibility when you do both ears at once. I guess if I do, at least we have a cane I can use. Dave has one and he sometimes uses it at night since his vestibular system was destroyed when he had leukemia. If anyone can teach me to overcome vertigo, it’s Dave! It took him two years, but he went from not being able to walk in a straight line (he would just spin in circles, and have to creep along holding the wall with both hands) to being able to walk with just a slight wobble now and then. He amazes me!
One of these days, I’ll write more about Dave and how we met. For now, I’m finally going to bed. 🙂