I want to start my post today by saying that I am shocked and dismayed that I haven’t posted anything here since Saturday! I honestly thought that yesterday was the only day I missed! I don’t even know how that happened! I apologize! I thought I was really staying on top of things here!

This is a long post but has the details of what happened today at the clinic. I decided to go into detail because I think there are some who are interested in what happens when someone is considering cochlear implants and there could be someone out there who is considering them for themselves or a loved one and the info could give them things to check out.

Today was a big day for me. I had 3 appointments at the clinic. The first was a hearing test at 10:00 this morning. The results of that showed that there has not been a change in my hearing levels since this latest episode occurred. There was, however, improvement in my word recognition in my left ear (the one that just lost hearing and is now my “bad” ear). The audiologist said that it’s possible that my brain has just become better at “filling in the blanks” for me. I’ll take it, whatever it is!

The second appointment was at 11:00 with my doctor. He discussed the results of my hearing test with the audiologist who specializes in cochlear implants (and who I was scheduled to meet with later in the day) and she told him that the hearing test results do qualify me for the implants. I was given a large packet of materials to read over about a month ago, so I had done my homework and came to the clinic with a list of questions for the doctor as well as a list for the CI (cochlear implant) specialist. Dr. Levine and Chet and I discussed a number of things. I am planning to have bilateral (both ears) implants. That is a choice. Some people choose to have only one. For some it’s about insurance coverage (thankfully mine covers bilateral implants). For some it’s a choice to have one done and then wait and see how they do before they decide about the second one. When you have CIs you usually lose any remaining residual natural hearing that you have permanently. It’s a choice to “go digital” for the rest of your life. For patients who have severe to profound hearing loss in both ears, two is usually better than one . Just like your natural hearing, input from both ears can give you a sense of direction about where sounds are coming from and improved hearing overall. There are no guarantees, of course. Because of my autoimmune inner ear disease, any residual hearing that I have now will likely be gone at some point (sooner rather than later) so I don’t really feel I have anything to lose by trying this. The next question is whether to implant both ears in one longer surgery or in two shorter ones spaced a few weeks apart. The doctor feels there might be a higher risk of blood clots from lying on the table for a longer period of time. He also told me that the riskiest part of anesthesia is going under and waking back up. Once you are under, it’s not usually all that risky. I asked him specifics about the risk factors because of my weight (I’m heavier than I’ve ever been right now after a year on steroids and for those that don’t know me personally, I’m significantly overweight) and also after a year of steroids I’m physically weaker than I’ve ever been and feel like my system has really been through a lot this past year. In addition to that, steroids cause you to be immune suppressed, so I had questions about risks in that light, too. Basically, he felt that the my weight and all the things I mentioned above were not factors that would cause him to feel that I am at a significantly higher risk for this procedure. He also concluded that it was really my choice if I wanted to have one longer surgery or two shorter ones. I decided that I would rather have one longer surgery and do both implants simultaneously. It might be a harder recovery, but to me that part is so short it is worth it. I feel that it would be harder on my body to go under anesthesia twice than it would be to stay under for a couple of extra hours. When they do this surgery, they say most people have a sore neck afterwards because your head is turned to one side for roughly 3 hours. In the case of simultaneous bilateral implants, I wondered if turning your head and having you lie on the side they just operated on for another 2 hours would cause any complications, but he said it would not. I also think that I would prefer to adjust to the two CI’s together from the very beginning rather than adjust to one and then add a second. Seems like that would change the sound and be harder in the end. It would also be less expensive for us and the insurance company to have one surgery rather than two. The risk factors are obviously more important than the cost, but it is a factor. I also had some questions about specific CI’s. There are 3 manufacturers, and I’ve been studying their brochures and looking up info about them. I’m so glad I asked his opinion. When I walked into the office I was leaning toward one company and had dismissed one in my mind because I had read about some recalls and manufacturing citations they had received. I found out that all of them have had some recalls. I also found out that his patients who have been the “stars” ie most successful, have all gone with one of the two companies that I was not leaning toward! His opinion really changed my decision process on this. More about that later. Overall, it was a very productive visit and all of my questions and my husband’s were answered. We made some decisions, too, which felt good. Simultaneous bilateral cochlear implants. Decision made.

We had time for a quick lunch (apparently there are like 100 Chinese food restaurants around the UMN campus!) so we had – yep you guessed it – a quick lunch at a Chinese place and then headed right back to the clinic for the 3rd and final appointment.

This appointment was for a cochlear implant evaluation with a CI specialist, Diane. Even though my hearing test results qualified me, there was still more testing to be done. I needed to be tested with hearing aids in and adjusted as much as possible for my hearing loss. This test was actually harder than any I have had. They tested the right ear, then both together, then the left with a long list of words that I had to repeat and then sentences. Trust me, it was a lot of words and sentences! I had to concentrate very hard and it was difficult for me to understand most of them. I also did the standard “press the button when you hear the beep” test for each ear but this time is was more “whoosh” static-type noises. Because the hearing aids I typically use are bi-cross (they bypass the formerly bad ear and send all sound to the formerly good ear) they had to use “loaners” that they keep in audiology and programmed those to my hearing loss. I found the results interesting. Even though my left ear is now the one with the greatest hearing loss, it is also the one with the best word comprehension. I scored 55% on this test with hearing aids, for word comprehension. That result means that the left ear does meet the criteria for qualifying, but just barely. The cutoff is 60% word comprehension. My right ear that now has the most hearing has stayed steady around 30% word comprehension for several years. The reason this is possible is that even though more sound is getting in on that side, it is more distorted, so it isn’t helping me as much. I can hear that someone is speaking (with the hearing aid) but can’t distinguish what they are saying. It’s kind of like the “waa waa waaa” thing. Diane talked to me about the fact that some people choose to have one implant and keep their residual hearing and use a hearing aid on the other side. They like to see how it goes with one before they take it all the way with the second one. She told me that the average CI user end up with around 60% word recognition which would be a noticeable improvement on my right side, but not much better on the left. In my case (which is very unique – AIED is rare) it still makes more sense to me to have both done now. I feel that if I end up being “average” (of course, I’m hoping to be one of the “superstars” that ends up in the 90% range!) it would still be a slight improvement on the left side. The odds are so high that I will continue to lose hearing, that I don’t feel like I’m really giving anything up. If anything, I’m allowing myself to get off the roller coaster ride I’ve been on for nearly 13 years and move on with my life. If this past year is any indication, the steroids have been the only thing that has kept me from losing more hearing any sooner. One month after I finished that course of treatment this episode occurred. I feel that implanting both right now would actually be helping me keep this level (worst) or improving it sooner (best!). All indications say that I would likely be a person who would do very well with CI’s but they cannot predict that for certain and it’s possible I could end up lower than average. In that case, I think my feelings are that I really gave it the best shot I had, and if I turn out to be one who doesn’t adjust well I’ll know I did all I could.

After we finished discussing bilateral vs single implants and she felt comfortable that we had considered everything we needed to, we moved on to the next part of our meeting. She had a list of items to go over with me that had to do with the specifics of the surgery and my expectations about the outcome. She included details about some of the risks of surgery. To be honest, I feel most nervous about the surgery itself and any possible complications. Like anything, they give you all of the horrible possible complications. I understand that they are rare, but since I have fallen in the “1% of the 2% of all patients who have sudden hearing loss….” I know that although it’s unlikely it IS possible. All of these are rare, but possible: your facial nerve is very close to where they will be working during surgery. It is possible that you could have facial nerve damage that would cause drooping similar to a stroke patient or someone who has Bell’s Palsy. If you have that complication, it is usually permanent. They have a way to monitor the facial nerve during surgery, so it is really rare for this to occur. The nerve for your taste buds is also very close to that area. There is no way to monitor that nerve, so having some changes in how things taste occurs more frequently than the facial nerve damage, but is still not very common. When it happens, most people say things have a slightly metallic taste. This nerve can repair itself, so of the ones who have this complication, most recover normal taste within a few weeks. Some people develop a twitch in their eye area once the implants are activated. Most of the time if that occurs, they can make adjustments to your program that will solve the problem (less stimulation in a particular area). Meningitis is a possible complication. It’s very rare to get it, but CI patients are more likely than some, so they require a vaccinations before they will do the surgery, and a second one 3 months later. If you happen to get this one, it can be fatal. The other thing that can be a complication is problems with dizziness and/or balance. If you have these, they can usually do things to help you manage it and keep it from interfering with your daily life too much. All of these things sound scary and I will be asking for prayers that I don’t have ANY complications when the time comes. They have to warn you about all of the possibilities.

The last part of the meeting (it was a 3 hour appointment!) was about the 3 companies and the specific devices they have to offer. I asked all of my questions and she gave me some insight and things to consider. She had the external devices (processors) there so we could see them and touch them and get a good idea of what they would be like. I’ll go into more detail about the specific devices and what I’m thinking about that in another post. For now I’ll say that it was very helpful to actually see and feel these items and have someone who works with patients who have used all of them give me input about their experiences and things I should still consider. I”m leaning toward one device right now (shockingly, it’s actually made by the company I had originally “discarded” because of the recalls) but still want to find out a few more things. By the time we finished, I felt like we had a very productive session and that all of my questions (and Chet’s) have been answered. I feel good about the decisions that we made, and feel like I have a realistic idea of what to expect with CIs and what the process will be like. I find it all interesting. I’ll share more about that in my next post as well.

For now, I want to thank all of you for taking the time to read this. I want to thank you for taking the time to check in on me and find out how I’m doing and what’s going on in my world and this process right now. I especially want to thank you for the prayers and encouragement. I’ve been praying that if this is the right path for me to take, that I would qu