Recovery process

The day of surgery (April 3rd), I mentioned I went back home with a bandage on my head, sleepy. All day and night of Tuesday, I was in pain. Good thing I was still sleepy. Wouldn't have handled the pain otherwise. Wednesday, I had to take Tylenol to relieve pain. Dad came over to cut the bandage off. It was awful because my hair was a mess... They had put my hair in weird places in order to put the bandage on my head. They shaved the area where they were supposed to work on. Now I look like one of the people who shaved that area to look cool - you know that fad?

(I don't take credit for this picture - I'm sure this was a professional model picture)

Thursday, it seemed that I had no pain so I only took medicine for when I went to sleep. Recovery process wasn't too bad - all I did was sit on the couch and watch TV all day and night. I barely did anything - I should have done my homework, but I didn't want to :-) Sunday, which was Easter, my dad took the tape off and the stitches were dissolved already. It's looking good - no problems so far. I just hope I don't get another infection - seems like I am risk because I had two before.

Being at school is a different thing. i had to go back the Monday after Easter. I felt exhausted at the end of the day - class, going to the bank, food shopping. That was more tiring than I expected. Tuesday (yesterday) was even worse. I had to sit at work for an hour and then I had a two hour break until class. There wasn't much for me to do. I was tired already and I hadn't done much. I finally went to two classes and I felt like I was already done for the day. I wanted to go to sleep and be able to sleep all night long. Instead, I went to my boyfriend's apartment so I could study for the midterm. I studied for a bit, but I found myself dozing off so I went to take a nap for about an hour. When I woke up, I still didn't feel refreshed enough, so I sat there, watching TV until I was ready to drive back to my apartment. When I got home, it was straight to bed and I passed out fast.

(Cartoon from google images)

Not so easy sleeping, by the way. I have to stay on the right side of my head, just like this guy in the picture! I'm so stiff from staying on that side. Haha, but I can't wait until I can sleep on the left side of my head. My body will feel so much better after :-)

Today, Wednesday, wasn't too bad. I'm still tired, but it seems like my body is starting to realize that I'm doing the best I can without interfering with the recovery. Right now, the area where the incision was made is still swollen - it will be a while before it gets smaller, but as long as it doesn't get bigger or tender, then I should be okay. All I'm doing is waiting for my appointment for mapping, then I can get more excited about this cochlear implant. It will be a huge change - there will be more sounds. Things will be more clear. Hopefully, talking with people I just met will be easier to do. And the best thing I look forward to is being able to talk to my family on the phone with ease.

That's all for now. I hope you have enjoyed reading my blog so far!

The journey of the 3rd surgery

Here I am in the third year of college. I had just found out the company that makes my product was back on the market. I had to make a decision if I was ready to have another surgery or not. I took some time to think about it because I know that it's a hard decision for me to make. I didn't know if I wanted to go through surgery again. It made me nervous about the pain that I would have to suffer after. But in the end, I knew it would be worth it for me to go through surgery. It was for me to understand my family and future co-workers, bosses, etc. I wanted to be able to communicate. I don't like to rely on pen and paper a lot. It's not my style. Some people prefer pen and paper. I can't tolerate it because I'm not patient, I admit that.

We went through insurance, got them to approve of the surgery. Then we had to meet with the surgeon to see if he approved of the fact that I needed surgery to fix the problem. He said "yes, go ahead and have the surgery". The cochlear implant was labeled as "faulty". It had to be because of how little it was functioning. Next step was figuring out the best date to have the surgery. This was back in the fall semester. When we tried to schedule it for during spring break, they said that we had to wait until after January 1st. I guess because it was a new year and they needed to start a new calendar after that. We scheduled the surgery after my winter break was over. It was scheduled for April 3rd.

The next step was to figure out accommodations. We needed to figure out who needed to drive me there and back, where to sleep, and who would take care of me during the week. That wasn't too hard to figure out - my dad drove me to the clinic for the pre-op appointment and we stayed overnight at the guest center that was located on location of the hospital. My mom was to take care of me for the rest of the week.

The day of the pre-op appointment, my dad and I had shown up early. We had a lot of time to kill so we ate at Burger King.

(Burger King's logo, not my creation. Their copyright logo)

We walked to the hospital from Burger King, figured out where the guest center was, and walked back to the clinic. We sat around for quite some time. It was pretty boring. We finally went in to see the surgeon, who took care of my first two surgeries, to see if I was ready for surgery the following morning. He pulled out earwax (ew) but said I was ready for surgery. He mentioned I had to show up to the hospital at 6 a.m. (early!) and the surgery was set for 7 a.m.

We walked back to the hospital to check in the housing area where we were going to spend the night. We struggled with the keys because we had no idea there was a small piece of paper with directions on how to open the door. There were three keys - one opened the front door, one allowed us to use the elevator, and one to the room. That was something we hadn't experienced. The room was an old hospital room so it was roomy and had enough space for both my dad and me to sleep. He slept on the couch because he figured it'd be better that I sleep in the bed - more sleep, the better. After checking in, we went to Santa Monica to see my brother and his girlfriend. We stopped at the pier.

(My picture I took with my dad)

After my dad and I visited the pier, we went to pick up my brother from his work. I loved his work because the environment was very chill and nice to be in. We went to a Mexican restaurant where I definitely practiced talking with them without my cochlear implant on. The restaurant was so loud, there was no point for met to have it on because I definitely could not hear the three of them. It was okay though because the food was delicious and they helped me with conversations. :-)

Dad and I went back to the hospital. Slept. Got up at 5:45, walked over to the check-in area. Got asked questions about my background. Had to change into the hospital gown and slipper socks - it was really cold! The nurse never showed up where I was waiting so when I showed up to the OR for surgery, the surgeon was mad that I didn't have my IV in yet and apparently, we were late. But the surgery went on, they gave me anesthesia, I knocked out pretty quick. It was around 2 hours. Dad told me the surgeon reported that all went well. Here is a link with all the information that involves the surgery - please don't try to read this if you get queasy or nervous with the thought of opening the skin behind the ear - there are some pictures on this website which can be graphic. Please do not look if you get sick at the sight of blood or the sight of something being cut open - http://emedicine.medscape.com/article/857242-overview

Once I got out, I dozed in and out all day. I was barely awake, and when I was, I could barely talk. My throat was dry from the anesthesia. I had a bandage on my left side of my head to prevent me from hitting it while it was still tender. Dad drove me back to my mom's house and I was definitely more awake once I got there.

(Don't I look beautiful? hehe)



So that's what happened with my surgery. Nothing to worry about! The next post will be about recovery - pretty short.

The background

Hello everyone,

I have decided to create a blog sharing about my experience with replacing my old cochlear implant with a new one. I want to share with you all because I have been asked by my brother, Steve, to share what it is like to hear everything again from a different level, if that's what we can call it.

However, before I start typing my blog narrating my experience, I would like to start off with my experience with my cochlear implant.

I was born with a questionable level of hearing. The reason why I say that is because we have no idea if I was born hearing, hard of hearing, or deaf. So my parents figured out that I was deaf by the time I was 18 months old. My mom typed up this entire blog about this process. You can find it here

My perspective of this experience is different. I learned at a young age, when I had hearing aids with two forms of communication, that I should be oral - that means communicating by voice and reading lips, relying on whatever sound I could receive. I knew my friends that I met in kindergarten at a wonderful elementary school wouldn't learn SEE for me. That was the form of sign language (but really, it isn't sign language at all. It's a method to help deaf students learn English in an efficient way) that I was using when I was diagnosed as deaf. My mom has mentioned in her blog that she observed I had chosen this method, and she is right. I just had a gut feeling, even as a young child, that they would not learn SEE. I went on through kindergarten with ease, but when I had reached the end of 1st grade, my hearing had dropped.

(From ucsfbenioffchildrens.org apparently)

My parents had a tough decision to make.

They struggled with the right fit for me. They didn't know what to do - they had to reach out to different support groups, all saying different things, and in the end, they decided to get me a cochlear implant. It was the best decision I thought they could make.

I'm biased, of course, because it was successful for me. Just because it was successful for me doesn't mean it will be successful for others. Keep that in mind, readers, that cochlear implants are not always the best decisions for deaf people out there. Sometimes, it's best to leave them deaf because it's who they are. If you believe they should get a cochlear implant. let them decide because it could change their life. Some could rebel and not want the cochlear implant. Some could want it but it isn't successful. Others just deal with it for the rest of their lives. For those that don't need a cochlear implant. they could have hearing aids, if it works for them. But being deaf isn't a bad thing. Being deaf is culture. It's a part of life. It doesn't mean deaf people are disabled. They are able to continue with life the way that hearing people can; they just can't hear.

I didn't have that perspective as I was growing up. I had no clue until I had arrived to a great university that had a huge deaf population. I was able to learn ASL in high school because I had met someone that I knew from preschool, but was unable to communicate with him. I had taken ASL classes at a community college while I was in high school. There's a book that is relied on most of the time, but must be there at all times in class because you can't learn everything from the book.

(From getglue.com)

When I arrived to the university, I was awkward, ignorant, and clueless to a lot of things. I improved my sign language and my social skills - I was able to learn more about different deaf individuals. They all had different backgrounds, which made for a rich and diverse deaf community.

Let's get back on track here - I got the cochlear implant July of 1998 - I was 7 1/2 years old. Having the cochlear implant worked out well, but then I got an infection that caused the incision to open up (I had no idea that it popped open. I thought it was just the infection that popped. Sorry to gross you all out). I had to have surgery the second time, probably summer of '99, because I was playing with one of my friends in my bedroom and I had hit my head against the canopy bed pole. Hitting my head had caused the metal that was placed for the cochlear implant to move out of place. When the metal moved out of place, I had gotten another infection that required for me to go into surgery. The surgery was necessary to move it back in place and clear up the infection. I had to have a shunt in my right arm for antibiotics every day after the surgery. I was already back at school for 3rd grade, I had to cover the shunt with one of my brother's old socks. We cut up the foot part of the sock and used the leg part, I guess you could call it that, to cover up the shunt because of my classmates. We definitely didn't want to freak them out with this weird thing in my arm.

Since the 2nd surgery, everything seemed to be working out well. I was communicating fine with my classmates. I had good friends - I even had my troublemaker year where I hurt a few girls during 4th grade. I was a normal girl growing up with a cochlear implant. Made it all the way to high school without realizing we had hit a problem with the cochlear implant. I had gone to House Ear Clinic because I noticed that I was hearing things normally, but they were muffled. I was wondering to myself why, so I had gone there to check up with my audiologist to ask why I was hearing muffled noises instead of clear voicing, sounds in the background, etc. She told me my t-mic part of the external part of the cochlear implant had gone bad. We switched out the t-mic with a new one, but then she noticed something wrong with the mapping part of my cochlear implant.

She told us (me and my mom) that half my electrodes were not working. They were not communicating with another - there were no signals from some of them. She did a few tests to get them to work, but they were dead. There are supposed to be 16 electrodes ( 8 pairs to communicate with each other ) but basically 5 or 6 electrodes were working at that time. I was shocked. My mom was shocked. Even my audiologist was shocked - she couldn't believe I was functioning just fine in the hearing world, communicating with all my friends and family, paying attention in class (sometimes. Students never pay full attention in classes). She assumed that the reason for my success for lasting this long without noticing a problem was based on my lip-reading skills. I have no idea if that's true - but it definitely applies to why I understand my family fine. I grew up with my family. Same applies for few of my friends - I knew a few of them since I was in kindergarten. I was picking up ways to understand them by lip-reading, without realizing it.

Unfortunately, Clarion (which is a part of Advanced Bionics) pulled themselves off the market so they could figure out the issues with their products that were causing facial nerve problems. It wasn't that there were too many patients that had the problem, but they were investigating a problem linked to people who had bacterial meningitis (which influenced their deafness) before the surgery. If they did have the meningitis, they were more likely to have facial nerve problems, which is what the company was trying to figure out. They wanted to solve the problem before they went back on the market. Don't take my word for this information though. This is what I've heard from a few people and a few resources - here's one http://www.asha.org/docs/html/TR2004-00041.html This report was typed up in 2003, so it might have been outdated and my information could be wrong. It's a possible conclusion as to why they had to withdraw the products off the market for research.

The audiologist decided to match up the remaining electrodes with each other, making it complicated, because they were not meant to be matched up together. But it's what had to happen in order for me to hear somewhat efficiently. It's not the best, but it was some sound I could retain for me to last through high school and college. I was devastated when I found out, but it did explain why I was missing out on a lot of information when I talked to friends of mine that I had just met in class for the first time or in groups. Naturally, groups are not the best environment for conversations because there's too many going at once and if I missed something, I missed it completely. There wasn't a lot of help around me because they weren't exposed to this kind of thing. They were still learning and I couldn't blame them for that - I shouldn't have to rely on them so much for hearing things - but the fact was that I just couldn't hear a lot of what was happening.

(From Advanced Bionics company)

Here is one of my old cochlear implants that I used from the first surgery all the way to 5th or 6th grade. It was pretty hard to wear for dancing, soccer, and trips out of school. It was pretty easy to have around school because I used to put it in a fanny pack or on a clip on my jeans.

When I entered college, it was a different world for me. No more struggles with communication. I only needed to learn more signs, but I picked up ASL easily as soon as I entered my deaf classes. I had two deaf classes in the fall semester of my freshman year and I have a lot of people in those classes to thank for my sign language skills. They helped me with my reception skills and my signing skills. I knew I needed improvement and they were patient with me. I refused to wear my cochlear implant here at the college because what was the point to wear it around fellow deaf classmates? What was the point if I knew I had interpreters? I was willing to voice for myself most of the time, but if I could have interpreters to help me understand what's happening in class, why bother using the cochlear implant? That was my method here at college. And honestly, it helped me out a lot. ASL could be limiting, but it didn't affect my grades at all. I've been doing fine here and I love it.

When I go home on weekends, drive on long drives somewhere, or for breaks, I do put my cochlear implant back on. It keeps me calm for when I'm with family and friends that don't know ASL. When I drive places, it keeps me calm because I can listen to music. Music is one of my favorite things and I don't know what I'd do without it. There were a few times here at the college that I wore my cochlear implant because I wanted to communicate with hearing classmates. I had reached the point of my education where I was no longer with other deaf students. I was finally in my classes that were focused on my major only. It's nice to be the only deaf student sometimes, but that meant group presentations were going to be difficult because there's a lot going on. However, my groups were always nice enough to make sure that I understood what was going on and I was able to get along with ease. I love all of my classmates so far and they're so sweet. They're understanding and they're willing to accommodate. I always thank them for helping me and I always put in ideas for the group, even if the ideas are not used later on. This is a team effort, not all about me, and I'm glad they have helped me realize that. I may have had that thought in mind that it was supposed to be about me and focused on how to communicate with me, but it is about working with each other to make the project successful.

The last tidbit of this background information: How did I decide to get the cochlear implant revision? It's pretty simple. I wanted easier communication with my family and friends. I had kept in mind about my future - how would I communicate with co-workers and people that I buy stuff from? I was raised in a world that I could be independent, asking and lip-reading while listening, and speaking up for myself. Understand that this is not against deaf, this is not saying deaf are lazy. This is not true at all. All individuals are different, deaf or hearing. We all have the same personalities. I think it sucks sometimes that deaf and hearing have different perspectives of these two worlds and how sometimes, it seems that they can't work together. I believe they can work together if they both make the effort. It's about compromises. It's about being there for each other. It's about understanding personalities and what is needed to make a great cohesion of the two worlds. But we all know this isn't a perfect world. I chose to replace the cochlear implant because it is a part of me. I accepted this as a part of me, and I know I can't choose to be completely deaf my whole life. Actually, I'm always going to be completely deaf. I AM completely deaf, but I choose to be able to hear to communicate and be myself. I want to listen to music. I want to hear babies cry, even though it's annoying. I want to hear dogs bark. I want to hear birds chirp. I want to hear everything, because I know that's what's around me, and I was able to hear this stuff before. And I want to hear everything again.

I realize that it might not work out. But I was willing to move on and do the next part of my life. I wanted to do this. No one influenced me to pick the cochlear implant - no pressure at all, only from my mind. This is my decision. It might not have been mine when my parents chose the cochlear implant for me, but I applaud them. I am proud of them that they were able to make such a difficult decision and have it be successful. It was a struggling experience for them and I'm happy that it worked out that this cochlear implant worked for me. Yes, there were negatives, but everyone has negatives in their lives.

That is my background information and I hope you understand some part of what I have experienced.

The next post will be about the process of surgery. The 3rd and more posts will be about my recovery process and how I am coping with the mapping process.

I hope you all are able to follow me along through this journey.




-Alicia