Tuesday, December 20, 2005

How this all began...

Spring Break, 1999
I was sick, of course – my body always seems to know when a long weekend or vacation is coming up and then decides to break down so that I can’t enjoy it. Well, I ended up having this really high fever of about 104 degrees and felt miserable. I called Matt at work and he called Mom and she said, “She needs to see a doctor!” Since my Mom’s idea of healing has usually been mind-over-matter, drinking a tall glass of orange juice and sleeping it off, I knew that it had to be bad. So, Matt took me to see Doogie (my very young-looking primary care physician) and he told me to alternate Tylenol and Advil and that did seem to do the trick.

About a month later, April 21, 1999 to be exact, I was co-testing with Beth. She was behind the audiometer and I was in the booth with the kiddo helping him focus for play audiometry through the sound field speakers (he wouldn’t tolerate headphones). He was doing what he was supposed to do and was responding to the presented narrowband noise (NBN) by dropping a toy in a bowl. Some of the times that he was doing this, I looked up to Beth and she was nodding her head which is our way of affirming to each other that a tone was presented and also reinforcing the kiddo – I don’t believe I heard any of those tones. After the kiddo left, I asked Beth to test my hearing. I know that we “screen” at about 15-20 dB so if I wasn’t hearing the NBN, then something was wrong.

Results revealed a bilateral, flat mild-moderate sensorineural hearing loss. With this degree of loss, I could still hear people talking but would be missing many parts of the conversation. We were both pretty flabbergasted. I said that I didn’t realize that this had happened, but Beth mentioned that she had noticed things like the audiometer monitoring level being turned up and me asking for frequent repetition when she was in the other room. Of course, Matt had told me for a while to get my hearing tested and I insisted that he mumbles (I still think he does). Matt believes that this had been going on since before March, so perhaps this whole disease process has been going on for a while longer. I had not experienced any dizziness or significant tinnitus.

That afternoon, I went to see an ENT (ear, nose and throat doctor) for further testing. After a whole series of tests including subjective (me responding to presented beeps under headphones) and objective (specialized equipment elicited and measured my responses without me having to do anything) measures, it was determined that I needed to return in a few weeks for further testing.

Unfortunately, Matt was in Arizona on his yearly work-related conference and I couldn’t get a hold of him, so I cried on Beth’s shoulder. She has been there since the beginning and she is totally awesome! I will always be grateful to her for her support.

Well, this all happened on a Thursday. On Saturday, my hearing changed……I woke up and realized that everything sounded very full and “bassy”. I called Beth immediately and asked her if she would meet me at the office to test my hearing again. Of course, she said, “Yes.” This time, my audiogram revealed a sloping mild-moderately severe sensorineural loss with corresponding results on objective measures. Unfortunately, it would be almost another month before I got to see someone...

During this time, I consulted specialists from all over the country, trying to find a diagnosis so that we could figure out a treatment.

Summer, 1999
I used amplification for the first time at the Educational Audiology Association (EAA) national conference. I brought an auditory trainer from work and boy, can I empathize with those kiddos when their equipment breaks down – it was awful! I also experienced for the first time how much I needed to be an advocate for myself (I am still not very good at that). Another milestone was meeting Ted Huber, a now-retired hard-of-hearing audiologist from the Illinois School for the Deaf. He taught me so much – where to sit, how to best position my FM microphone, when to request lighting changes, what CART is, how to plug myself into the audiometer so I can do speech perception testing better, how to request scripts for live performances and that interpreters were available, but most of all, he taught me that I can do ANYTHING I set my mind to. What a wonderful man and he also has a wonderful wife!

After the conference, I finally saw my physician and was prescribed Prednisone, a steroid treatment often used during sudden or progressive sensorineural hearing loss. Also that summer, after bloodwork and further analysis, I got my first diagnosis - Autoimmune Inner Ear Disease (AIED). The way that I describe it, my immune system was attacking my ears. It is pretty rare accounting for only 1% of all hearing losses.

Some time in July, I also received my first pair of hearing aids. Being the optimistic person that I am, I thought, "I'll go with the in-the-ear hearing aids" since I did not want the larger behind-the-ear hearing aids at that time and was hoping that things would get better – little did I know that I would soon not have a choice. These were pretty fancy hearing aids, complete with a remote control. One night while I was watching TV, I had the sensation that the volume was changing. I looked at the TV remote in my hand, the settings on the TV and realized that nothing was changing. The next time it appeared to change, I looked up and saw Matt pointing my hearing aid remote control at me and pressing the buttons! Sigh.

Due to my diagnosis, I had done some research and saw that there was actually a study being done specifically about AIED. I ended up getting in contact with a doctor in Iowa and he asked me if I would be willing to drive out for an evaluation. So, Matt and I drove out there and met with him in late August. After all was said and done, he said that I definitely had AIED and I could be accepted into the study. I filled out some paperwork and had to adhere to their protocol. The purpose of the study was to determine the efficacy of the medication. I was currently on Prednisone but there is also another medication called Methotrexate, which is less harmful to the body but yet has been shown to slow down or stop the effects of immune-related disorders. There were 3 possible effects of this study:

1) No change – I would remain on the same dosage of Prednisone since it wasn’t hurting nor helping.

2) Improvement – They would decrease the amount of Prednisone and introduce Methotrexate to the point that it would replace the Prednisone all together.

3) Worsening – As was my case, because I did not respond at all to the medication, I was “kicked out” of the study.

I was part of the study for 2 months and had to take 60 mg of Prednisone every day – that is a lot and it really made me quite nauseous and sick.

Fall, 1999 - Summer, 2000
By Winter, 1999, my hearing levels had progressed to severe to profound loss in both ears. It took all of about 9 months. Perhaps the hardest part of experiencing rapidly progressive loss is not knowing month-to-month, week-to-week, even day-to-day, what you were going to be hearing. I was blessed to work with a group of compassionate and wonderful colleagues who got me through the hard times by interpreting for me during meetings, taking my phone calls and even helping me with testing in the booth. Also, surprisingly to me, my speech changed. You would think that after having normal hearing for 28 years, I could maintain my speech. It is amazing how much the brain needs to get that auditory feedback in order to help with production of speech sounds.

I plugged away at my job, knowing that my hearing was pretty bad and that I needed a lot of help. It got to the point when I didn't know if I could still do my job and I was getting really bummed out.

August 3, 2000
Had my audio today to see how I was doing. Both ears were in the profound range, aided levels were in the moderate to moderately-severe range and I had 0% aided discrimination (not counting the “the’s” I was guessing at on the sentences). Pretty discouraging. My doctor says that it’s time…Matt sat in the booth with me during this test – it was pretty revealing to him. My doctor mentioned that a woman had canceled her surgery for August 4, 2000 and asked me if I wanted to do it tomorrow – no way!!!! Surgery is set for August 11, 2000. Wow. We’ve decided to implant my right ear which is my worse ear. I will receive a Clarion from Advanced Bionics.

August 6, 2000
Wow, I got my first “sympathy” e-mail. I don’t think I ever thought of this situation as being 100% negative – a lot of good has come out of this. Namely, my new-found connection with the kiddos and even some in the Deaf community.

E-mail has been a godsend for me through this ordeal. I belong to a group called MDG (discussed Meniere’s and AIED), CI onelist (lots of people with or contemplating CI’s – probably the most useful so far), EAA (discusses more kiddo issues) and of course, my personal/ professional contacts where I bounce ideas off of others. I’ve posted notes about my worries, what to expect, what companies other people have considered and why and general encourage, support and prayers. Another good thing is that I am able to share my experience and expertise as an audiologist with others.

August 11, 2000 8:36 a.m.
Well, here we are, surgery day…I’m kinda scared (of course) but I have gotten great advice and support from my friends and family. Last night Minette came over. She was #6 in the country to get a CI. She also has a Clarion but their first series, 1.0? Basically, she told me that the surgery was ok, a little dizziness, coming out of anesthesia is a pain, but most of all, she told me to RELAX. Who me? I really appreciated her coming and giving me (and Matt) firsthand knowledge of the surgery. I have also received several e-mails from people wishing me well. My surgery is set for 12:30 p.m. and I need to pick up Matt from work and be at the hospital by 11:15 a.m.

I called my parents’ house last night and told them I loved them. I wasn’t trying to be morbid or anything, but I just wanted to tell them that. I ended up saying that on the answering machine, but Dad called back. He spoke with Matt and told him that they were willing to come down on Saturday, but I told Matt to tell him we would call if they really needed to come.

It's hard to believe that I'm supposed to be a bridesmaid for Carrie in 8 days. I tried on the dress today – at least it still fits! That’s good but it sure is a pain to put on and take off. (I would find out later the “real” way to put this dress on and take it off….SIDE zipper…)

I’ve been awake on and off since about 6 a.m. I’ve been doing busy work this morning – laundry, cleaning, vacuuming. I will probably take my last shower for a while soon and then pick Matt up around 10:45 a.m. He is my “responsible adult” – I guess the hospital called him yesterday and called him that title – kinda funny.

Well, that’s it for now. The next time I come back to write here, I will be implanted with an Advanced Bionics Clarion HiFocus Platinum Series – quite a mouthful!

August 21, 2000
It’s 10 days post-implant and I have been in remiss in my duties in terms of journaling what has happened. I will try and do this retrospectively…

August 11 - Surgery itself was a “success”. I went to the hospital about 11:15 a.m., went through pre-op procedures, cried a little (I was pretty scared) and confirmed with my surgeon that he would NOT take off too much hair (because of the wedding and all). Surgery started about 1:00 p.m., lasted about 2 1/2 hours and then I was in recovery for about another 2 1/2 hours. When I “woke up”, I was still extremely groggy and somewhat dizzy and the tinnitus was AWFUL but I was able to be home by about 7:00 p.m. My head was wrapped with a tight bandage and I sort of looked like an asymmetric wrestler (that ear covering). Apparently, my surgeon used dissolving sutures on the inside and “superglue” on the outside, so I was free to take a shower when I felt up to it! When I got home, there were lots of flowers and cards! Matt was a WONDERFUL nurse and took very good care of me. He set me up in the room to sleep and made sure I drank lots of water. I could tell that my head hurt and actually took some of the Tylenol with codeine (it takes a lot for me to actually take a pain killer). It is kinda hard find a comfortable sleeping position – my neck was pretty sore and still is actually because I can’t sleep on my right side.

August 12 – I spent the day mostly watching TV, relaxing and sleeping.

August 13 – My first shower!!! It felt wonderful. Chung took some pictures of Matt taking of the bandage and gauze – not too bad! I was very careful around the incision site. Later that evening though, it was pretty sore around the incision and Matt noted that it was a little red. I would call the ENT office the next day. Another pretty relaxing evening…

August 14 – I called ENT and they said to come over that afternoon. I pretty much relaxed that morning and felt pretty good – good enough to drive myself to the appointment. I got there in the afternoon and my surgeon said it looked fine but that he was glad that I stopped by. He gave me the thumbs up for the wedding, too.

Ok, the next few days were pretty much the same. I ran a couple of errands a day and felt up to visitors also. In terms of recovery, the tinnitus continues (even now!), there are still occasional dizzy spells, the pain isn’t too bad, though I sometimes have shooting pains. At times, I also have funny “clicking” noises (sounds sort of like very muffled fireworks). The metallic taste in my mouth has also been a nuisance. A few days ago, Matt also mentioned that my breath smelled bad, kind of like infection, but it eventually went away. The most significant thing I have noticed since surgery is how hard it is to have a unilateral loss. Having the right side be the “dead side” is really difficult for me. I now understand why kiddos miss “incidental conversations” and are more likely to repeat a grade, etc. I also notice problems with localization and I am just EXHAUSTED trying to keep up with lipreading people because the auditory input I am getting is different (again). I can’t wait until hook-up (which has been set up for September 6, 2000 and 1:00 p.m.).


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