Here I go again (maybe)
I have officially embarked on the road to becoming a bilateral CI user. I have been kicking around the idea of surgery on my other ear for many months, but now I have actually taken the first steps in the process.
Last month, I met with a bilateral CI-user to talk about her experiences. I had met this woman last year in the supermarket. I actually bumped into her in the supermarket twice, the first time about a week after her first CI surgery, and the second time about a week after her second CI surgery! She has the same doctor and audiologists as me, so I contacted her when I started to seriously think about surgery for my right ear. Of course we met up in the cafe section of the supermarket.
She really convinced me that two ears are better than one. She says that music sounds richer, that she can tell where sound is coming from more easily, and that she has more success in noisy situations. That's three big checks in the plus column in my opinion. She explained to me that one CI was wonderful and that she understood speech and many sounds like I do, but with the second implant, everything sounded "the way it was supposed to sound," like the hearing was now complete. She actually doesn't even think about her hearing issues very much anymore, because she is so comfortable with her hearing and auditory input as the way of life. She feels that she hears as well as naturally hearing people do.
Here's why I value her input and feel that her experience would shed a lot of light on my decision. She lost her hearing when she was 21, so we have a similar background of growing up with natural hearing. She is older than me and was without sound for longer than me, which bodes well for my success. BUT she also used hearing aids all throughout the time since she was 21 and really made use of her residual hearing, where I had gone the visual route with lipreading and sign language.
While we were sitting at the table, there were two boys talking at a table a little ways from us. I could hear that they were speaking, but my companion could understand what they were saying! I don't know if this is a clear indication that two is better than one, or if she is just a more successful CI user than I am, but it was quite an eye-opener for me. I can't imagine not thinking about my deafness and not feeling hard of hearing anymore. That is not my expectation, nor really my desire. But the amount of success and pleasure she has gained from two implants was enough to persuade me to contact my audiologist Jennifer the next morning and say I wanted to go ahead with a second surgery!
On Thursday I went to the hospital and had a meeting with Dr. Bigelow. He questioned me about my reasons for wanting a second implant, and talked to me about the benefits and the risks. He was very careful to explain again that the second implant is not this momentous change like the first time. It's not going from nothing to seemingly everything, but it's more an enhancement of what I hear now. He mentioned the very same benefits that my supermarket friend mentioned. He also cautioned me on risks. Apparently, some people who had no complications the first time do experience side effects the second time, especially in the areas of dizziness, loss of balance, and loss of taste. There is also the possible weakening of the facial nerve, which worried me a lot the first time. It's possible that my right side compensated for my balance and my taste sensors and if I now have surgery there, I could be thrown out of whack for a while. I have hope that since my first surgery was so easy, the second should follow suit, but it's not something to be taken lightly. Having you head cut open is no easy decision.
After the discussion and examination of my ears, Dr. Bigelow agreed that he would do the right side surgery for me. Hurray! However, that is just the green light. Now I have to pass the very significant hurdle of insurance coverage. Many companies deny a bilateral implant surgery because it's not deemed medically necessary. Part of the problem is that successful CI-users like myself test at almost normal hearing in the audiology booth and those numbers don't change much with the second implant. The benefits are all about the quality of sound, not the quantity. There are no tests to show the insurance company that two are better than one. I would think there might be tests in the future based on directionality of sound and if people with two implants can pinpoint where the sound is coming from. Directionality of sound has a lot of bearing on personal safety, so I think that would be the angle to emphasize in debate.
Anyway... the hospital surgery scheduler has submitted paperwork for me and will work on getting the pre-certification. Now I just need to wait and see what happens.
Last month, I met with a bilateral CI-user to talk about her experiences. I had met this woman last year in the supermarket. I actually bumped into her in the supermarket twice, the first time about a week after her first CI surgery, and the second time about a week after her second CI surgery! She has the same doctor and audiologists as me, so I contacted her when I started to seriously think about surgery for my right ear. Of course we met up in the cafe section of the supermarket.
She really convinced me that two ears are better than one. She says that music sounds richer, that she can tell where sound is coming from more easily, and that she has more success in noisy situations. That's three big checks in the plus column in my opinion. She explained to me that one CI was wonderful and that she understood speech and many sounds like I do, but with the second implant, everything sounded "the way it was supposed to sound," like the hearing was now complete. She actually doesn't even think about her hearing issues very much anymore, because she is so comfortable with her hearing and auditory input as the way of life. She feels that she hears as well as naturally hearing people do.
Here's why I value her input and feel that her experience would shed a lot of light on my decision. She lost her hearing when she was 21, so we have a similar background of growing up with natural hearing. She is older than me and was without sound for longer than me, which bodes well for my success. BUT she also used hearing aids all throughout the time since she was 21 and really made use of her residual hearing, where I had gone the visual route with lipreading and sign language.
While we were sitting at the table, there were two boys talking at a table a little ways from us. I could hear that they were speaking, but my companion could understand what they were saying! I don't know if this is a clear indication that two is better than one, or if she is just a more successful CI user than I am, but it was quite an eye-opener for me. I can't imagine not thinking about my deafness and not feeling hard of hearing anymore. That is not my expectation, nor really my desire. But the amount of success and pleasure she has gained from two implants was enough to persuade me to contact my audiologist Jennifer the next morning and say I wanted to go ahead with a second surgery!
On Thursday I went to the hospital and had a meeting with Dr. Bigelow. He questioned me about my reasons for wanting a second implant, and talked to me about the benefits and the risks. He was very careful to explain again that the second implant is not this momentous change like the first time. It's not going from nothing to seemingly everything, but it's more an enhancement of what I hear now. He mentioned the very same benefits that my supermarket friend mentioned. He also cautioned me on risks. Apparently, some people who had no complications the first time do experience side effects the second time, especially in the areas of dizziness, loss of balance, and loss of taste. There is also the possible weakening of the facial nerve, which worried me a lot the first time. It's possible that my right side compensated for my balance and my taste sensors and if I now have surgery there, I could be thrown out of whack for a while. I have hope that since my first surgery was so easy, the second should follow suit, but it's not something to be taken lightly. Having you head cut open is no easy decision.
After the discussion and examination of my ears, Dr. Bigelow agreed that he would do the right side surgery for me. Hurray! However, that is just the green light. Now I have to pass the very significant hurdle of insurance coverage. Many companies deny a bilateral implant surgery because it's not deemed medically necessary. Part of the problem is that successful CI-users like myself test at almost normal hearing in the audiology booth and those numbers don't change much with the second implant. The benefits are all about the quality of sound, not the quantity. There are no tests to show the insurance company that two are better than one. I would think there might be tests in the future based on directionality of sound and if people with two implants can pinpoint where the sound is coming from. Directionality of sound has a lot of bearing on personal safety, so I think that would be the angle to emphasize in debate.
Anyway... the hospital surgery scheduler has submitted paperwork for me and will work on getting the pre-certification. Now I just need to wait and see what happens.