Part III - UNC-Chapel Hill
March 8 - March 21, 2005
On Tuesday, March 8, we made our first of many trips to UNC Chapel Hill. My husband and I were both very excited about the trip for more than one reason. First, there was a good chance that we were going to finally get some answers. Also, my husband was excited, of course, because he is a huge Carolina fan. And, I knew that this would be a break for us - although it was a 5 1/2 to 6 hour drive one way, it was a chance for us to have some time to talk and focus on just this problem - not cleaning the house or doing laundry or making bottles. And, nothing against my kids, because it was difficult to leave them, but no children pulling at our legs constantly needing something while I couldn't hear to figure it out.
It had really been a frustrating wait. I felt like my life had been put on hold, and although I saw my children daily, I felt like they were strangers to me, and I to them. I noticed that I had been avoiding my daughter - I was scared of being alone with her because I couldn't hear her. She would try to speak to me, and all I found myself doing was staring at her, trying to read her lips (hard to do with a near-four year old who doesn't enunciate). She was so confused as to why I wasn't responding to her the way I normally did. Why I didn't answer her questions or get her juice or milk when she asked for it.
When we got to Chapel Hill for our 2:45 appointment (we barely made it) it looked like there was going to be a long wait, and we hadn't had lunch yet. We sat down and prepared ourselves to wait for a few hours, when a lady came and got us. It was an audiologist, a resident I believe, and she did pretty much the same tests on me as I had previously, with the same conclusion. Then, another lady - very nice, came to see me. She wrote everything down, told me that she was an audiologist and that I had a very profound hearing loss. I nodded my head in agreement, trying to hold back my tears (and failing miserably), then she hugged me and wrote down, "We can help you" - then she underlined help several times. For the first time, in a while, I felt like things were going to be ok.
The audiologist then took us down the hall, and left us in another small waiting area. This entire time I was so dizzy (the vertigo really hadn't subsided much) this building was huge - like a maze. I wasn't sure exactly if we were waiting on the doctor or what. Then, another lady came and got me - she looked so warm and friendly. She motioned that we were going somewhere and she was going to type to me. She told me who she was, Carol, and that she was the head of the Adult Cochlear Implant Program and Audiology Departments in the hospital. She told me that I seemed to be a good candidate for this surgery - that I didn't have to live in a world of silence. I asked about Rush Limbaugh, and she said that he was also a good candidate - that the implant was perfect for people like us because we had normal hearing for so long, and lost it quickly, and was going to have it taken care of quickly. She talked to me, answered any question I had, and was such a comfort. Things were really looking up. She said that she noticed that I was seeing a resident today, but she would rather me see her husband, who was one of the cochlear implant surgeons on the staff. He was out of town, but she would call him to see what he suggested. After speaking with him, she said that he wanted me to see the other surgeon, Dr. Buchman, that day if he could fit me in. Everyone was being so helpful.
Carol then took me to see the resident, Dr. Basin, that I was supposed to see that day. I also met a wonderful nurse, Marsha. (Everyone I met there was absolutely wonderful.) Dr. Basin had a look at my M.R.I. and then Dr. Buchman came in. He and Dr. Basin had looked over my M.R.I. and discovered that my cochlea were inflamed. My right ear seemed worse than my left ear (which made sense, it's hearing had been gone for two weeks longer). He wanted to do another M.R.I. there - in Chapel Hill. He said this probably meant that there was some type of disease process going on inside my body that was manifesting itself inside my ears (or so I understood, it was so frustrating to me, because I could only get bits and pieces of the conversation; I was terrible at lip-reading and my husband was just writing down a few key words so he could listen). He said it could be lupus, rheumatoid arthritis, auto immune inner ear disease, Cogan's Syndrome, or 20-30 other things. Since some of my symptoms suggested Cogan's Syndrome, he wanted me to set up an appointment with an ophthalmologist. This would be done on my next visit. In the mean time, I was to continue taking the anti-viral medication and really increase my steroid dosage. I was going up to 60 mg per day for 14 days, and then tapering off from there. We also set up another M.R.I. for 7:00 the next night, so we stayed an extra night in Chapel Hill.
Our next visit was scheduled for about a week and a half later, so there I was, waiting again. The steroids were doing nothing but making me hungry, fat, angry, and giving me tons of acne. I had a pretty good feeling that at my next visit Dr. Buchman was going to go ahead and schedule a surgery date. I had accepted the fact that this was permanent hearing loss, but was so frustrated with it. I felt completely inadequate as a mother or as anyone else - I couldn't work, I cleaned the house some, but got dizzy and tired very easily. I was keeping my son at home with me, who was five months at that time - he kept me busy and it was nice to have someone to take care of instead of me being taken care of all the time. I made his bottles, kept the house clean and laundry done, made good dinners in the evening - all the things that I was always too busy for while I had been working. I felt like I was just waiting for surgery, and not thinking ahead to the next day, week, month, or any future.
Finally, March 21 arrived. I had an ophthalmologist appointment at 9:00 a.m. - I had my eyes dilated and several "tests" done, and the conclusion was - no Cogan's Syndrome. I guess in a way I was glad, but this still meant no answers to what had gone wrong. We had just enough time to make my next appointment with Dr. Buchman and Dr. Basin. Again, Carol, the head of the audiology department, came to get me. She didn't look as up-beat this time, which scared me a little. I could tell she was preparing me for something. She took me back to her office so she could type, and told me that she had just gotten back from a conference in Dallas - it was very exciting, there was some wonderful new technology. She told me about the Freedom implant from Cochlear and about it's features.
Then, she got a little more serious. She said that the inflammation in my cochlea had my doctor concerned. She said that most of the patients they do surgery on have a gradual hearing loss, and lose their hearing for different reasons. She said that the doctor was worried about just how effective a cochlear implant would be for me because of all the swelling; it seemed that he had just performed a cochlear implant surgery on a man who had a lot of damage in his cochlea as well, and it didn't go very well. She said that he just didn't know how well it would work until he got in there and was able to "feel" the tissue - he could see if the tissue fell apart or was ossifying or had damaged the cochlea to the point that is just wasn't going to work. Here I was on my roaler coaster again - I had kind of been "up" for a week, now I was definitely coming down. She said she wanted to prepare me for what my surgeon, Dr. Buchman, was going to talk to me about. She said that we needed to hope for the best and stay optimistic - she said, "We don't have a choice". I knew she was right and really appreciated her candor. I needed to stay grounded, realistic, and aware of any possible outcome. She seemed very happy that I wanted both ears done (at the time, I didn't know much about cochlear implant's and just assumed that you were supposed to get both ears - wow, was I in for a wake-up call). She said that by doing both ears we were sure to get the "better" ear - the one that would be most receptive to the implant.
She then took me to see Dr. Buchman. And, although I couldn't tell what was going on, I could read the expressions on his face and my husband's face and he actually sounded pretty optimistic. Carol was wonderful (as usual) and had brought a laptop into the room with us so she could type what he was saying as he explained some things to us. He said that there was a small chance that this surgery wouldn't help much, but a much better chance that this surgery would at least give me something. I thought, "Ok, I can handle this. "Something" means that I could hear my daughter again, and my son's first words".
So, he went ahead and scheduled the surgery and was so glad to hear that I wanted both ears done. This, he said, would ensure that we got the "better" ear, since both ears looked so damaged. The left, of course, still looked better than the right. For this reason, his plan during the surgery was to begin with the left ear and if all went well, he would then move to the right ear. However, if he just couldn't get the implant in place in my left ear, then he would know that the right ear wasn't worth trying.
I had cried so much that day. After having my eyes dilated that morning, and a day full of tears and ups and downs, I was completely exhausted. And the vertigo still being my best friend didn't help much - I could barely walk everywhere we went, I just wanted to lie down and sleep for about three days. That was a long six hour drive home.
By the way, my apologies to you, Dr. Buchman, if I have written down any ridiculous information (ha ha) - it was hard being deaf and trying to get my husband to remember every single word you said (I drove my husband crazy asking him to tell me - what was his tone? what word did he use to describe this and that? did he seem concerned about blaa...blaa...blaa - maybe I should be saying sorry to my husband instead!!!).