Hi, it's me again. I'm still catching up on blog posts to get the story caught up with where things are in real-time at the moment - this one and maybe one more should do it.
Even though I have some concerns - let's be honest here and call them "worries" - about possibly getting a cochlear implant, the next step is really risk-free, and apart from the time spent driving and the small insurance co-pay, it doesn't require any investment on my part, so let's dive right in. Once my hearing aid audiologist suggested that I would be a CI candidate, the next step was to go to a clinic that specializes in CIs and have a formal evaluation done. Unlike a hearing aid, the FDA (that's the Food and Drug Administration for those of you not in the USA) has a very specific set of requirements for people to a candidate for a CI.
The first step is finding a clinic that is "in-network" with my health insurance plan. Based on all of the research I've done, the costs for just the CI surgery itself are in the neighborhood of $65,000 to $100,000. I really don't want to be paying 20% of that number to pick an out-of-network clinic; sure, there's a maximum out-of-pocket for the year, but it's a lot higher than my in-network yearly deductible. Also, I really want a clinic that has experience with more than one of the CI manufacturers. "Captive" clinics that only work with one manufacturer won't be able to give me any unbiased advice about which CI manufacturer to choose. Finally, I want a clinic that has as much experience as possible - I don't want to be the second patient that they have ever implanted. Oh, and it would be really nice if they were next door to my house so I don't have to drive too far.
I found a clinic that met most of those requirements - unfortunately, it's nearly 2 and a half hours' drive away. I'm willing to live with that, though - this is a big decision. Picking a clinic and a CI manufacturer is, I know, quite a personal decision, so I don't want to focus too much on the choices I personally made, but I'll mention that after calling around, I made an appointment with the Michigan Ear Institute in Farmington Hills, MI. They told me to plan on spending a couple of hours; I would first see Dr. Golub, an audiologist, and then see Dr. Chan, a surgeon. Scheduling the appointment was the easy part - the harder part was waiting for the day to arrive. On the outside, I appear to be a very patient person, but I was definitely chomping at the bit for the day to arrive. I spent some time in the intervening days by doing more research about CI (including watching a video of the surgery) and reading about the three companies that made CIs. Because I have a Phonak hearing aid, I spent more time looking at Advanced Bionics; I joined their community site at hearingjourney.com and asking questions of the people there who had a CI.
Finally (it was only a couple of weeks later), the day of the evaluation arrived. My wife wouldn't be able to go with me because she also had a doctor's appointment the same day. I piled in the car with 3 of my children and my son-in-law, and after saying good-bye to my wife and 4th child, I was on my way. I was calm and looking forward to the appointment during that drive - the only thing that worried me was what would happen if I was hearing too well to be a candidate - would I have to wait and come back next year?
After arriving, filling out the paperwork, and paying the insurance co-pay I did the one thing you are guaranteed to do at nearly any medical appointment - wait. It wasn't a long wait though until Dr. Golub, the audiologist came to get me. We went right into the testing booth where she asked me some questions about my hearing and explained the test to me. I would simply sit and listen to a recording of 4 different people reading sentences and then repeat them. If I didn't hear everything, I would say what I did hear. Dr. Golub also explained to me that the sentences may be nonsense sentences, so not to worry if they don't make sense. I was going to do the test with my hearing aid on, so no uncomfortable headset. Dr. Golub then left the booth, closed the door, and started the test.
RHHEKSH HSHCIEEYS HkOHWKL SIOLXHO HSK WIOS, or something like that - that was the first sentence. I thought for sure I'd be picking up more than that. I don't remember how many sentences there were - maybe 20 or so? In some sentences, I got the whole sentence right off the bat; some of them I picked up a word or phrase. Many of them I got nothing. When I say I "got nothing" I mean I heard someone talking. It was loud enough. I could tell whether it was a male or female voice, but I could not understand any of the words. We finished one set of sentences, and Dr. G. told me we were going to do another set; I could "hear" what Dr. G. was saying because I could see her face through the window and use the lipreading to understand. This test, more than anything else, made me realize how much I was using lipreading to survive. The people on the CD reading the sentences were often un-understandable, but Dr. G was "loud and clear."
In just a few minutes, I was done with the test. Dr. G told me that I could ask a family member to join me if I wanted to, because she was going to bombard me with information. I grabbed my son from the waiting room and we went into her office to wait while she grabbed some information. When she came back, she told me that I scored 25% on one sentence list and 22% on the other. That meant that I correctly heard 25% and 22% of the words in the sentence lists. That's one worry down - I had failed the test. The next hour or so was a whirlwind of information, questions, looking at models of the CI and their processors (the part that is worn on the ear outside the body), clinical studies, etc. I was officially a candidate. We also discussed which ear should be implanted - Dr. G. explained that my right ear had been without stimulation for so long, that the auditory nerve could be atrophied, and that she would recommend an implant in my left ear. Ouch - that's one of my worries come true. In the back of my mind, I was expecting to be sent to the surgeon for another discussion, then more tests, then come back another day to officially say "yes" to the CI and pick a manufacturer.
Well, things moved much more quickly than I expected. I already had done a huge amount of research on CI, so I felt as if I was well prepared already. The only thing that I wasn't well prepared on was picking which CI manufacturer I wanted to have. Because of my Phonak hearing aid, I was pretty familiar with Advanced Bionics and the things they had to offer. I also knew a good bit about Cochlear. Those were the two offered by the clinic - so I was in a good position to ask a lot of questions. Getting real unbiased advice is pretty tough on the Internet. For the most part, there aren't many (or any?) patients out there who have had the same ear implanted with different manufacturers, and if there even are any, the change was probably made because of something very unique to their case. Choosing a CI manufacturer is a personal decision, just like choosing a clinic, but this time, I at least had Dr. G. to give me her experience and her advice. In the end, I believe I could have been happy with either Advanced Bionics or Cochlear, and that the doctors would support me with either decision. I won't go into the reasons why (I believe it's personal and unique to each individual), but I decided to go with Cochlear. In terms of things moving quickly - I want to point out that I didn't feel rushed or pressured by anyone to make a decision. Going into the evaluation, I was already convinced in my mind that a CI was the way to go and it was only a matter of confirming everything medically that stood in the way.
All of the CI companies have departments/subsidiaries that specialize in helping to get pre-approval from the insurance companies. While I was waiting to meet with the surgeon, I filled out the paperwork to allow Cochlear to work with my health insurance on my behalf to get approval for the procedure. Every case is different, but Dr. G. told me to expect that process to take 6 to 8 weeks. While I waited for Dr. Chan (the surgeon), I played with my youngest daughter. She's at the stage where she wants to see and play with everything, and that includes the doctor's chair, the examination chair, the supply cabinet, the storage room, and (when Dr. Chan came in) Dr. Chan's shoes. Dr. Chan reviewed things with me, explained that she had already discussed with Dr. G. and that she agreed with what we discussed so far. She gave me the opportunity to ask questions - the important 3 for me were: how many of these have you done? Apart from the normal issues of general surgery, what are the possible negative things that could happen? What happens if my cochlea is "ossified?"
I was happy with her responses, and it was on to more paperwork. I got the orders for a CT scan and an MRI (to check out my cochlea) and an information sheet on vaccinations (to prevent meningitis - which is considered one of the risks of the CI surgery), and I was done. The appointment had taken just over 2 hours, but it really flew by. I felt that both Dr. G. and Dr. C. had spent enough time with me and answered all of my questions. I was exhausted on the long drive home, but happy. I wondered what the future held. What would my family say? That's a topic for another post.
Even though I have some concerns - let's be honest here and call them "worries" - about possibly getting a cochlear implant, the next step is really risk-free, and apart from the time spent driving and the small insurance co-pay, it doesn't require any investment on my part, so let's dive right in. Once my hearing aid audiologist suggested that I would be a CI candidate, the next step was to go to a clinic that specializes in CIs and have a formal evaluation done. Unlike a hearing aid, the FDA (that's the Food and Drug Administration for those of you not in the USA) has a very specific set of requirements for people to a candidate for a CI.
The first step is finding a clinic that is "in-network" with my health insurance plan. Based on all of the research I've done, the costs for just the CI surgery itself are in the neighborhood of $65,000 to $100,000. I really don't want to be paying 20% of that number to pick an out-of-network clinic; sure, there's a maximum out-of-pocket for the year, but it's a lot higher than my in-network yearly deductible. Also, I really want a clinic that has experience with more than one of the CI manufacturers. "Captive" clinics that only work with one manufacturer won't be able to give me any unbiased advice about which CI manufacturer to choose. Finally, I want a clinic that has as much experience as possible - I don't want to be the second patient that they have ever implanted. Oh, and it would be really nice if they were next door to my house so I don't have to drive too far.
I found a clinic that met most of those requirements - unfortunately, it's nearly 2 and a half hours' drive away. I'm willing to live with that, though - this is a big decision. Picking a clinic and a CI manufacturer is, I know, quite a personal decision, so I don't want to focus too much on the choices I personally made, but I'll mention that after calling around, I made an appointment with the Michigan Ear Institute in Farmington Hills, MI. They told me to plan on spending a couple of hours; I would first see Dr. Golub, an audiologist, and then see Dr. Chan, a surgeon. Scheduling the appointment was the easy part - the harder part was waiting for the day to arrive. On the outside, I appear to be a very patient person, but I was definitely chomping at the bit for the day to arrive. I spent some time in the intervening days by doing more research about CI (including watching a video of the surgery) and reading about the three companies that made CIs. Because I have a Phonak hearing aid, I spent more time looking at Advanced Bionics; I joined their community site at hearingjourney.com and asking questions of the people there who had a CI.
Finally (it was only a couple of weeks later), the day of the evaluation arrived. My wife wouldn't be able to go with me because she also had a doctor's appointment the same day. I piled in the car with 3 of my children and my son-in-law, and after saying good-bye to my wife and 4th child, I was on my way. I was calm and looking forward to the appointment during that drive - the only thing that worried me was what would happen if I was hearing too well to be a candidate - would I have to wait and come back next year?
After arriving, filling out the paperwork, and paying the insurance co-pay I did the one thing you are guaranteed to do at nearly any medical appointment - wait. It wasn't a long wait though until Dr. Golub, the audiologist came to get me. We went right into the testing booth where she asked me some questions about my hearing and explained the test to me. I would simply sit and listen to a recording of 4 different people reading sentences and then repeat them. If I didn't hear everything, I would say what I did hear. Dr. Golub also explained to me that the sentences may be nonsense sentences, so not to worry if they don't make sense. I was going to do the test with my hearing aid on, so no uncomfortable headset. Dr. Golub then left the booth, closed the door, and started the test.
RHHEKSH HSHCIEEYS HkOHWKL SIOLXHO HSK WIOS, or something like that - that was the first sentence. I thought for sure I'd be picking up more than that. I don't remember how many sentences there were - maybe 20 or so? In some sentences, I got the whole sentence right off the bat; some of them I picked up a word or phrase. Many of them I got nothing. When I say I "got nothing" I mean I heard someone talking. It was loud enough. I could tell whether it was a male or female voice, but I could not understand any of the words. We finished one set of sentences, and Dr. G. told me we were going to do another set; I could "hear" what Dr. G. was saying because I could see her face through the window and use the lipreading to understand. This test, more than anything else, made me realize how much I was using lipreading to survive. The people on the CD reading the sentences were often un-understandable, but Dr. G was "loud and clear."
In just a few minutes, I was done with the test. Dr. G told me that I could ask a family member to join me if I wanted to, because she was going to bombard me with information. I grabbed my son from the waiting room and we went into her office to wait while she grabbed some information. When she came back, she told me that I scored 25% on one sentence list and 22% on the other. That meant that I correctly heard 25% and 22% of the words in the sentence lists. That's one worry down - I had failed the test. The next hour or so was a whirlwind of information, questions, looking at models of the CI and their processors (the part that is worn on the ear outside the body), clinical studies, etc. I was officially a candidate. We also discussed which ear should be implanted - Dr. G. explained that my right ear had been without stimulation for so long, that the auditory nerve could be atrophied, and that she would recommend an implant in my left ear. Ouch - that's one of my worries come true. In the back of my mind, I was expecting to be sent to the surgeon for another discussion, then more tests, then come back another day to officially say "yes" to the CI and pick a manufacturer.
Well, things moved much more quickly than I expected. I already had done a huge amount of research on CI, so I felt as if I was well prepared already. The only thing that I wasn't well prepared on was picking which CI manufacturer I wanted to have. Because of my Phonak hearing aid, I was pretty familiar with Advanced Bionics and the things they had to offer. I also knew a good bit about Cochlear. Those were the two offered by the clinic - so I was in a good position to ask a lot of questions. Getting real unbiased advice is pretty tough on the Internet. For the most part, there aren't many (or any?) patients out there who have had the same ear implanted with different manufacturers, and if there even are any, the change was probably made because of something very unique to their case. Choosing a CI manufacturer is a personal decision, just like choosing a clinic, but this time, I at least had Dr. G. to give me her experience and her advice. In the end, I believe I could have been happy with either Advanced Bionics or Cochlear, and that the doctors would support me with either decision. I won't go into the reasons why (I believe it's personal and unique to each individual), but I decided to go with Cochlear. In terms of things moving quickly - I want to point out that I didn't feel rushed or pressured by anyone to make a decision. Going into the evaluation, I was already convinced in my mind that a CI was the way to go and it was only a matter of confirming everything medically that stood in the way.
All of the CI companies have departments/subsidiaries that specialize in helping to get pre-approval from the insurance companies. While I was waiting to meet with the surgeon, I filled out the paperwork to allow Cochlear to work with my health insurance on my behalf to get approval for the procedure. Every case is different, but Dr. G. told me to expect that process to take 6 to 8 weeks. While I waited for Dr. Chan (the surgeon), I played with my youngest daughter. She's at the stage where she wants to see and play with everything, and that includes the doctor's chair, the examination chair, the supply cabinet, the storage room, and (when Dr. Chan came in) Dr. Chan's shoes. Dr. Chan reviewed things with me, explained that she had already discussed with Dr. G. and that she agreed with what we discussed so far. She gave me the opportunity to ask questions - the important 3 for me were: how many of these have you done? Apart from the normal issues of general surgery, what are the possible negative things that could happen? What happens if my cochlea is "ossified?"
I was happy with her responses, and it was on to more paperwork. I got the orders for a CT scan and an MRI (to check out my cochlea) and an information sheet on vaccinations (to prevent meningitis - which is considered one of the risks of the CI surgery), and I was done. The appointment had taken just over 2 hours, but it really flew by. I felt that both Dr. G. and Dr. C. had spent enough time with me and answered all of my questions. I was exhausted on the long drive home, but happy. I wondered what the future held. What would my family say? That's a topic for another post.