Update from the Girl Herself

The doctor said the surgery was uneventful. I was told it would take two hours. Instead, it took 45 minutes. I was rolled away at 7:20 am, fell asleep before I hit the operating room, and surgery started at 7:45 am. When I woke up, I found a clock and couldn’t quite tell what time it was since my vision was blurry from the drugs (I have LASIK perfect eyes). When I finally could make out the time on the clock, it was 9:00 am. I couldn’t believe it and thought my eyes were deceiving me. I was home by 10:30 am. I didn’t feel ready to get dressed and go home, but I didn’t want to stay at the hospital.
The first day — it was the pain that bothered me most and I could not get in a comfortable position in bed. I felt a constant, dull ache with pressure on the right side of my head. That night, I was able to go in other rooms and do a few things.
Day two… crash. I could not get out of bed. I was having eXtreme Vertigo. As a mom of a three-month-old, I had to continue pumping every few hours. A tough task when I couldn’t sit up. It was bad enough I had to go to my follow up appointment feeling like this. I managed to get in the car and kept a dark cover over my eyes. Sat still the whole way there. Thankfully, I got a wheelchair and sat there the whole time frozen in position. Paul did the talking and thankfully, I wrote my questions on paper before the surgery.
The incision was the least of my problems after the first day. It was mostly numb and the neck pain was more like a swollen gland. My throat didn’t hurt, but I was coughing a little after the surgery because it was so dry. I freaked when I learned about the breathing tube, but they promised it would be in and out while I am out, which is what happened. Since I had nothing to eat or drink since the night before, I had built a big thirst. The nurse didn’t want me to drink anything too soon after surgery to avoid nausea.
I was extremely thirsty for two days after the surgery. I lived on cold stuff… popcicles, sodas, etc. I had a bite of food here and there. Today is the first time I felt hungry. Tuesday and Wednesday – spent the whole day in bed either asleep or had my eyes closed to avoid a dizzy spell. Getting up to go to the restroom was hell. Through these two days… I am thinking why the hell did I do this?
My body has had enough abuse for the past few months. I think this one was worse than the others because with the others I could at least communicate, use the computer, read, and watch TV. With this one, I had to lie there all day long and move as little as possible.
When my older son tried to talk to me on Tuesday, his lips were all over the place or rather my vertigo made me feel like they were. I just couldn’t convince my mind it was all in my head.
Today, I still have dizziness, but not to the severity of the previous two days. I am sitting still on my bed (which I’ve been glued to since Monday) as I type this and check my emails (which hubby already filtered for spam… what a nice guy!). Many thanks to Paul for responding to emails, posting updates, and letting me use his laptop since I can’t get to my PC, which is in a different room.
I did have numbish taste or weird taste. One spot may have had a metallic taste. The weird taste is slowly going away. My ear is still numb.
Hook up is on August 8. Thanks for all your wishes and prayers. They mean a lot. Time to lie down again.
P.S. Photos coming soon whenever I can finally make way to my computer.

The Healing Continues

Hello everyone, “The Husband” again. Meryl as requested that I post that she recovering but is experiencing severe vertigo. She apologizes for her slow response to e-mails and requests and asks that you bear with her.
Thank you.

They Have Rebuilt Her

Hello everyone, this is Paul “the husband” reporting in to let everyone know that Meryl is recovering well.
She reported to the hospital at 5:oh my G-d 30, and answered the same questions from different people 14 times. We were originally told that surgery was going to be 2 hours, however, she was rolled into surgery at 7:20, it started at 7:45 and she was out at 8:30. The doctor reported that it was very uneventful. Meryl woke up around about 9:00 and we are on our way home by 10:15.
After arriving home, she rested uncomfortably in bed sporting a very stylish headband which is very reminencent of a 1980’s red Day-Glo “Valley Girl” headband. After an extended nap, she is awake now and feeling better, and has ceased to say “It hurts! I’m very dizzy! Why did I do this!”
She goes back to the doctor tomorrow for her surgery follow up and either she or I will report back.

Post-Surgery Info

Every patient recovers differently, but I wanted to get an idea of what to realistically expect after the surgery, which takes two to three hours.
This is what Anne who had her surgery on July 7, 2003 had to say about her experience:
I also had to be at the hospital at 5:30 am. I was glad about that, though, because I wanted to be first and get it over with. Things moved very fast after 6:30 am with a constant flow of the surgical team stopping by to introduce themselves. My surgery was scheduled for 7:45, but they gave me the sedative at 7:15 (I don’t remember much after that) and took me to the operating room too for the prep. So the 7:45 time was actually when the SURGEON started; I was actually unconscious as of 7:15.
My surgery took about 2-1/2 hours for one ear without complications. Recovery time was one week to return to basic body functions, and a second week to get back to normal. I went back to work (desk job) after one week but was not 100% (maybe 75%).
The things that bothered me during recovery were:
– Sore throat
– Mild nausea
– Side of my neck hurt to touch
– Looking at a computer, TV screen or reading made me dizzy – Days 2-5
– Had a low-grade fever
– Afraid to touch the incision for a few days
– Pain pills made me groggy. I stopped taking them on day three because I thought maybe they were making me feel sick and took Advil instead.
In hindsight, it was a mistake for me to pick orange juice to drink after surgery, because of the acidity to both my stomach and my throat. I have also heard that apple juice is a bad choice if nauseated. 7-Up would have been better.
With the recovery, you just have to ride it out and take it easy. It will get better within the first week, and then that much better the second week.
Meryl notes to herself: get as much computer work done today as possible and rely on Sonic Coke for nausea (always the best especially with its crushed ice).

Sound Decision Site and Sounds

Jeff did a great job sharing his experience with a cochlear implant in A Sound Decision. This link takes you to the page that demonstrates what saying a sentence sounds like through regular hearing, a hearing aid, hook up day, a few days later, and two weeks later. To me, it all sounds the same except for the beeps and blips… it sounds like noise not like a person talking.

The site also talks about how sound works with a cochlear implant. Jeff describes his hearing experience and what he experiences is not necessarily what I will experience. It may take me more time or less time… it may not sound as clear. We do not have the same history with regard to our hearing loss.

This PowerPoint file is a simulation of what a cochlear implant sounds like. Thanks to Michael Chorost for the pointer.

Three More Days

<Deep breath> Whew. Found out today that I should get hooked up the week of August 11. What a week that’s going to be considering my oldest starts school that week. Still waiting for the phone call about the time of the surgery.
It’s lucky that I am doing this while on maternity leave. The stress of the surgery leaves me unable to think straight right now. Plus, after the surgery … I don’t know how well I’ll be able to understand people without sound. Yes, I can wear one hearing aid, but my left ear is unreliable and doesn’t handle being the only ear hearing. That’s why the right ear is getting the honor of the implant.
Though I do lipread, hearing aids enable me to understand more than if I didn’t have them on. Just ask Paul. He can tell you I understand him less with my hearing aids off than when I have them on. It was fun (not) in the past month when I had to have each hearing aid repaired. The back up hearing aid is just not as good. Figures — I spend my last month as a dual-hearing aid wearer with uncomfortable and lopsided hearing. It’s back to normal now, but I’m trying to swim a lot this weekend since I won’t be able to swim for a few weeks.
It’s a good thing I am doing this now while I have a young baby. It’ll be an opportunity to hear the baby in a new way. But it also means not really hearing the baby for at least a month. Hate to miss his coos and laughs. I just hope I will be able to hear normally before the baby is one-year-old. Don’t know how long it’ll take before I can hear comfortably with the CI.
So nervous. I’ve got a life long history of dizziness that has gotten worse as I get older. Some have said the CI made it worse while others saw improvement.
Those who know me… know I hate the unknown. 2003 has been the year of the unknown.

CI Resources

When I started researching cochlear implants last fall, I found a couple of great discussion groups where I learned from others’ experiences and stories. There are two good ones I recommend: Cochlear’s Forum for those considering a cochlear implant, and individuals who have a cochlear implant and their relatives (especially parents of deaf children). Coclear also helps make Connections. The other is CI Hear.
Other good places to research CI is the manufacturer Web sites. Cochlear, Med-El, and Advanced Bionics. One of the hardest things to do was choose the brand of the device. I’ve selected Cochlear, but this by no means indicates the other two aren’t good quality. They all have their strengths and weaknesses. It’s based on the wearer’s needs.

Health Insurance Gripe

Unbelievable. We get a call from the hospital’s finance office asking how we want to pay and if I am outpatient or inpatient (it’s outpatient, unless there is a problem). Well, from what we understand, insurance was supposed to pay for the whole deal. According to the hospital, this is the first time an HMO has ever not paid for the whole thing. Go figure.
We call the insurance and the popular answer to our questions is… <drum roll> “I don’t know.”
Just what I need… another roadblock to a stressful and difficult year (besides the birth of kid #3, of course).
Thanks for letting me blow off steam here. I cussed while writing this, but this is a G-rated blog…


Here are my audiograms from 1988, 1992, and 1999.
1988 audiogram part 1
1988 part 1
medium large
1988 audiogram part 2
1988 part 2
medium large
1992 audiogram
medium large
1999 audiogram
medium large
The conclusion? I’m gosh darn deaf. 🙂 Seriously, my hearing hasn’t changed since birth. Maybe a drop.
Other test results:
Lipreading and hearing test — 100%
Lipreading / no hearing test 70%
Lipreading / hearing test — lousy
Took a look at four words and listen for one word — got all but one right (the one I debated for a second) without asking for repetition.
Hearing loss: 90-110 db
Hearing aids: 60 db
Average hearing: 10-30 db with 30 db being a whisper
We won’t know how much of a difference the CI makes for a while. After the surgery, I have to wait three to four weeks before getting hooked up. So, I’ll be in silent world during that time. Once I get hooked up, what I hear won’t be anything like what I will hear a few months from now. It takes time to get used to a new way of hearing. Remember learning to ride a bike? Drive a car? Put on contacts for the first time? It took practice. Hearing aids and CIs are the same thing.

Open for Business

Date: July 21, 2003.
So? I get a cochlear implant.
The victim: my right ear.
33 years after I was diagnosed with a profound hearing loss, I’m taking a step towards to hearing better. My hearing aids have been good to me. I could hear music, voices, rain, dogs barking, and babies crying. After much research and talking with the doctor, I have learned the cochlear implant is supposed to help me hear better. I can’t imagine what that means because I think I can hear a lot of sounds. The only thing I can’t do, and that’s the holy grail, is hear what people say without lipreading (talking on the phone, for example).
The cochlear implant is not a guarantee I’ll be able to talk on the phone. I might be able to or I might not. It could take six months or one year. Who knows. There are many variables when it comes to figuring out how much a person will benefit from a coclear implant.
On July 1, I was flabbergasted when I realized it was only three weeks to the surgery. I began to panic and get cold feet. It’s now one week away and I’m nervous. I’m about to embark on a life-changing experience… for the good, I hope.