Smullen

The surgeon for my cochlear implants is Jennifer Smullen, I first met with her on Jan 8th.

I am going to try to record what i can remember of this appointment... that's the downside of starting this blog after i've been to two appointments already. But here we go.

I was just meeting with her for a consultation of what the surgery will be like and as a way to get to know who my surgeon is before I undergo the operation. I like knowing who will be in that room working on me and she made me feel more confident about her as a surgeon. I went to the appointment with both my parents, and right away I was regretting that. They had so many questions and was trying to understand how different of a hearing I will be obtaining. They already have trouble understanding how i hear now, and it is not that easy for me to explain this to hearing people for some reason. So i get quite frustrated with my parents at times, but they did have some good questions.

My dad cared more about the mechanics of the surgery and the cochlear implants, while my mother cared about the aftermath and what things will be like for me. Me? I only cared about the numbers and how well my hearing could improve. I like to think that I do not have high expectations for this implant, but not low expectations either. I am expecting a mild improvement over what I can hear now, and to have a chronic headache for at least a few days after the implants are turned on. I always seem to get a chronic headache whenever I get new hearing aids, but my surgeon said that this is a bigger change for my brain and it will take time.

Basically this appointment was to get any concerns out of the way and understand the entire process of the surgery, then the 2nd appointment was to become more educated of my hearing loss and what cochlear implants are and so forth.

My overall feelings of the meeting with Dr. Smullen was positive and I felt comfortable with her operating on me. This is my first operation ever in a hospital and I absolutely hate hospitals so that was making me a little nervous, but she sounded experienced and seemed to know what she was doing and talking about. The one thing that she commented on was how she was impressed with me, like she could not believe that I had a severe to profound hearing loss due to how well i could talk and how well i've done so far in life, and in school especially. In school, I'm a freshman at URI and i made it onto dean's list, and have the goal of staying on that list for the rest of my time in college. I managed to graduate from high school, a rigorous one that is ranked the 3rd best public high school in Massachusetts. And i did all of that with the use of hearing aids and FM systems, and now i wonder if i can do better than that with cochlear implants... just keep on wowing people. It seems like every week i get some kind of praise from a random person or someone i just met who just can't believe i'm deaf.

Well I am tired now, more to come later.

Feel free to post any questions!

-Annie

Surgery

As the result of this past full-day appointment on Feb 9th, I am a good candidate for the surgery and currently waiting to hear back from the board of whether i can get it.

They are meeting on March 5th, and i'm hoping my surgeon will call to schedule the surgery sometimes after that. I hope that i can get it done late may right after i get out of school and the entire surgery only takes 2-3 hours these days. I would be in and out in the same day and my doctor said that it is just a minor surgery and there are not that many risks associated with the operation. The only major risk is that i could lose facial nerves, but my surgeon said that she has never had that happen to her before and she's done over thousands of these surgeries.

There is one other major risk i am taking with this surgery and that is i will be losing all of the possibility to use a hearing aid in my left ear again after the surgery. I do not know why this happens, but that is what I have been told. There is a high chance of my surgery being a success though, so I don't have to worry about this risk, but it is a risk that I have to take if i want to improve my hearing instead of it going the other direction if i continue to use my hearing aids. I feel like if i continue to use my hearing aids, 10 years from now, i probably would hear less than i do now, and i already can't hear that much anyways!

Back to what will happen with the surgery, she will make an incision behind my ear, no shaving off my hair! and go underneath the skin to my skull, and shave the skull down in order to make room for the internal part of the cochlear which contains a magnet. Ya, i get a magnet in my head... which means i will set off the lovely airport security gates after this surgery... and i can never get a MRI but that's not the end of the world.

The recovery period takes a month, and during this time the internal part of the cochlear implant is not turned on and its just a time to allow my skin and skull to heal over. I will only be able to hear out of my right ear during this time through my hearing aids, so it will be quite weird and i probably will constantly remind people to talk to me on my right side... yay... at least i can still drive around. =)

At the end of the recovery period, I will be going back to the hospital to get the external part put on, and programmed and I will finally hear once again! They keep telling me that i should expect to hear many new things, and the sound quality is going to be different than what i hear now. I have no idea what to expect after it's turned on, and the best part of it... it might be turned on before i go camping in boothbay harbor, maine, on the ocean and i might actually hear the ocean more clearly. I think that would be the most amazing sound to really hear or the barefoot steps across the hardwood floor or the wind whistling. I can kind of hear those things already, but with the cochlear implants, it should be more clearer and more definite of a sound ingrained into my brain.

Feel free to leave any questions or things you wonder about that i can answer for you.

-Annie

Video

I recorded a short video showing my hearing aids and kind of explaining where the cochlear implants would happen on my head.

I also want to put up some pictures of what the cochlear implant I am getting will look like.

The nucleus 5 was just released this year, and I picked this one due to its size, it was smaller than the other option i had and i have small ears anyways. It wasn't easy to decide on which one since they are pretty much the same, just has a few minor differences.

The beginning

This is my first entry on this blog...

I decided that i should record my journey of getting cochlear implants and the entire process of hoping to get better hearing skills.

I should start this out by telling more about myself. I am Anna, and currently 20 years old. I just started as a freshman in college this past year and that was a huge change for me. The transition from high school to college was a lot harder than i thought it was going to be, but i am finally getting the hang of the college life now, maybe.

Now time for some history, my favorite subject ever! I was born deaf in 1990 before they even did testing for hearing when the babies are born... so because of that my parents did not figure out that i was deaf until 19 months old. The doctors diagnosed me with a severe to profound hearing loss and fitted me with hearing aids. I have worn hearing aids my entire life, and never really considered cochlear implants until now.

I feel like there is so much more to explain about my entire process thus far, I already started the process of getting evaluated and meeting with the entire team at the hospital. My doctor is Jennifer Smullen, and I hear so many good things about her and her experience so I am feeling more confident about that this will be a success. One of the main reasons that i decided that now was the time, rather than sooner or later was because I am in the mode of changes and feel like college could be so much better with improved hearing.

The plan would be to have my cochlear implants done on my left ear. Over the years, my hearing loss has been fairly stable, and as of right now if you sat in a soundproof booth and listened to a tape of a man saying words. Just listening, its a deep voice saying "ready? say 'ball'" and it goes on and on with tons of one syllabus words. I have to repeat those words the best that i can hear it or at least the sounds. I have always hated doing these tests, but its the way they measure how much i can actually understand. My most recent test that is recorded stated that i only managed to get about 5% of the words correct using my left ear then 32% with my right ear. This is done with hearing aids... and with no visual at all, so now you can see how much i rely on lip reading to understand people and why i hate phones with a passion.

On February 9th, i went into Boston to go for a full day appointment at the MEEI and meet with numerous people. My day started out with this man named Dr. Eddington who is in a way a consultant and he works on the actual cochlear implants trying to improve them and make it more effective. I thought that was the most pointless part of my day, but then from there i went to meet with the social worker, Pat. She was also a hard of hearing woman and tried to introduce me to new communities of people who are like me. I got quite frustrated with her due to how I felt like she was treating me like I knew nothing about being deaf and that it was a new thing for me. I tried to be nice to her, but it was kind of frustrating. She asked me a lot of questions about my life and was checking to see if i was psychologically stable for this kind of procedure. I think I passed alright.

My favorite part of the whole day was meeting with my new audiologist, Mark Campbell who also turns out to be deaf like me and currently has cochlear implants in one of his ear and a hearing aid in the other ear. It was really nice to actually have an audiologist who can relate to what i am going through and understand how hard it is to listen and how much of a difference our hearing is compared to the normal human being's ears. I did more hearing tests, including the one where i listened to the tape of words. Before i did that test, i had to do a test where they put headphones on my actual hearing nerves part which is behind your ear and listen for a beep, no hearing aids involved. It's always weird doing it because i can feel the vibration too but i have to listen for a beep in order to raise my hand when i hear it. Also those headphones kinda hurt... haha.

After all of those testings, I met with him and learned more about what cochlear implants are and understand the pro and cons of them, and i had a choice between Advanced Bionics and Nucleus 5 cochlear implants. What they look like its like a hearing aid, the part that goes behind my ear, but nothing goes into my ear canal, then from that part of the device is a wire with a circler piece on the end of it, it is about the size of a half dollar and would go onto the back part of my head. The surgery is to put in the actual device that sends electronodes to my auditory nerves and stimulate them to listen and receive sounds. Right now, hearing aids just amplifies the sounds into my ear canal, does not actually really work my auditory nerves all that much. Over time the method of doing that in my ears is not as effective and I find myself struggling more to hear and understand, which is why I am getting the cochlear implants in hopes of hearing better. I know I will never have normal hearing like everyone else, but i hope to get something decent. The audiologists say that my ability to hear words without visual cues should improve from 5% to about 40% to 50% with the cochlear implants.

I feel like this is a long post, but there is a lot to tell, and more will come later.

-Anna