Hey guys! Wow, long time no updates! I apologize for being so quiet lately I have just been so intensely busy! Juggling work full time at Penn Medicine with teaching part time at Rowan University and taking two classes a semester towards earning my MA in Writing for the past year has been no joke! I’ve really been enjoying everything I do though. None of this stuff would have been possible if it weren’t for getting my cochlear implants (or at least not teaching) and it has all been so incredibly rewarding.
School has especially been an interesting experience for me. I am never shy from discussing my cochlear implants with anyone that will (or won’t…as is the case with at least some of my sleepy, bored students…hey I do teach at 8am afterall…) listen from students to classmates, professors, and really anyone in between. One of my students even mentioned that she wants to be an art teacher for the Deaf and learn ASL and hear more about my story.
On the student side of things, well I’m continuing to work towards completing God Granted Me Hearing which will serve as my MA in Writing Master’s project. I have been doing significant research for this project especially on Deaf culture and ASL. There’s definitely a lot to learn and I’m really loving this journey I’ve been on.
But enough about school, the real thing I want to talk about with this post is my hearing appointment I had at Jefferson yesterday morning. This appointment was one of the rare times in my life when I scheduled an appointment kind of “just because”. I mean I guess there was kind of a point to it – I haven’t had a hearing appointment in over a year and haven’t really followed up with anyone as much with my right ear post-activation as I did with my left. I guess it’s because I kind of knew what to do and expect and things have been going well for me. Also, I’m just so busy it’s hard to get around to scheduling appointments like that these days, but with my summer hours allowing me to have off on Fridays I thought it would be a good time to schedule a checkup just to make sure everything is working as it’s supposed to.
I’ll be honest – I was pretty nervous about this appointment. For once though I wasn’t nervous because of my hearing abilities or how I’d test, but I was nervous because I’d be getting a new audiologist. I loved my last two audiologists – Dr. Louisa Yong Yan Liang and Alyssa Lerner (who was an extern when I had her, but I really liked her). Louisa left Jefferson to go to Chicago since her husband is a doctor and took a job there. Alyssa was in a similar situation where her boyfriend finished medical school and matched with a hospital in St. Louis so she left to be with him. This left me without an audiologist.
With all of that being said, I was happy to hear that there was another audiologist I could see, Laura Somers. However, I was still nervous at the prospect of meeting someone knew and gaining a new audiologist.
Fortunately, all of my nerves went away the moment I met Laura and her extern, Shelby Weinstein. They immediately made a great impression on me. They were as sweet as could be. One of the first things that Laura said was “Were you in an article…something about talking on the phone?” referring to the article that I did with The Philadelphia Inquirer. This right away made a great first impression on me because it showed me that she did her homework to familiarize herself with my case and my history. She was very personable and friendly which helped me to relax and made me feel comfortable during the appointment. She had an extern, Shelby Weinstein, who was also very nice. She was more quiet but friendly and seemed eager to learn. Laura took her time with everything she did to make sure to show Shelby what she was doing and Shelby seemed really interested and engaged with it all.
The first thing that Laura did was check my settings and the volume on my right ear. The right ear was the main focus of my appointment since I’ve been doing so well with the left (which makes sense since it was the first ear I had implanted and it’s really common for your first ear to be your dominant or preferred ear since you’re more used to it and it’s also kind of a mental thing – getting your first cochlear implant is such a huge, impactful thing (or at least it was for me) that you don’t forget it. It’s still big and impactful with the second one, but not as much since you have something great already to compare it to whereas with the first one you may be comparing it to nothing.
Laura explained to me that her main goal was to balance my ears out more. She played a series of sounds/pitches and gave me a “loudness chart” where I had to indicate if the noise was too soft, soft, medium, loud but comfortable, or too loud. Most of the pitches fell in the medium or too soft range. Laura turned it up a little bit. At first it was too loud and a bit overwhelming so she had to turn it down a little bit to make it more level. It seems pretty good now but I am still adjusting to it. I notice it the most when I put my processors on for the first time in the morning.
Next Laura and Shelby took me into the hearing test booth and they tested my right ear. First they did the beeps and I scored in the normal – above normal range. This will never cease to amaze me. I still remember when I’d be lucky to have any ranges or pitches listed on the chart. When I was first considering my first cochlear implant I told my surgeon, Dr. Willcox, that I would consider it a success if I could have about 30% of my hearing (at the time I had at the most about 7%) and he said my expectations were way too low – he wasn’t wrong! Now I probably have around 80-90% of my hearing.
Here’s where my hearing was on 6/29/2017 on my right ear…quite a difference!
This test was from January 28, 2016 – a little over a month after having my left ear activated. The red circles at the bottom were for my right ear. This is almost a year before I had it implanted.
Next, Laura tested me for word recognition with my right ear. I was a little bit nervous here because the last time I was tested for this in my right ear was on March 25, 2015 I didn’t do very well – earning on a 68%.
I didn’t do too well on my first word recognition test back on March 25, 2015…
However, I ended up doing just fine. I knew I was doing well – you really can just tell with these things if you’re doing well or not. The more I felt I got them right the more confident I became. In the end I performed even better than I imagined by earning a 90% – quite a big difference from the 68% I earned the last time!
I only got about 3 of them wrong and I wasn’t off by that much on the ones I missed!
For the final test Laura tested me with full sentences and she added in a high level of background noise – the highest level possible – to make it harder. She admitted that a lot of people with normal, natural hearing struggle with some of these. Honestly I think what makes this hard sometimes is how WEIRD the sentences are. One time I got a sentence that was something along the lines of “The monkey is using sign language.” This time I got “A camel is not the most comfortable animal on which to ride” and “Could you speak up a little?” which isn’t a weird sentence on its own, but when you say it in the context of a hearing test it becomes a little awkward and confusing – Laura actually asked me to repeat it probably because she wasn’t sure if I was saying back the sentence or asking her to repeat herself lol. #DeafProblems – right?
I scored an 84% with this test. I thought that I got about a 70 on the sentences last time but I don’t see a record of it (I keep everything) so now I’m thinking this might have been the first time they did full sentences with my right ear? Either way it would be an improvement and I’m quite happy with these results!
126/150 or an 84%? I’ll take it! It sure beats my pre-cochlear implant scores of 0!
My appointment concluded with Laura calling me a “Rock star” and telling me I was good to go until next year when I should come in just for a checkup unless of course something is wrong. She told me to keep her posted on my book and everything else. I was definitely impressed by both Laura and Shelby’s care and I look forward to working with Laura more in the future and I hope that Shelby stays at Jefferson so I can work with her more in the future as well because she seems like she’s going to be really good once she finishes her schooling.
Ever since I got my first cochlear implant I have wanted to get my second ear done. Getting my cochlear implant is the best thing I’ve ever done. Read pretty much any of my past entries on this blog and you’ll see why. It’s given me many new opportunities that I never had before. I can enjoy music like never before, I can call my boyfriend when he’s on the road, I was able to take on a new role at work as a Digital Marketing Manager where I’m making calls to clients on a daily basis, and I can even hear while swimming for the first time ever!
Some people end up going bilateral all at once. This is especially common when it comes to young children. However, more often than not people get one done at a time. This is what my surgeon recommended to me. He recommended waiting at least a year before getting the second one done so that I’d have time to get used to and fully adjust to my first implant and hearing all of the sounds. Well, we are coming up on a year now…
This past weekend I was talking with my mom about my upcoming appointments. I knew I had one with my audiologist, Louisa coming up. I originally thought it was in October, but it turned out it was actually not until December. We still felt like we were missing something something, so we decided to call and find out when my next appointment with my surgeon, Dr. Wilcox was. Turns out, there wasn’t one scheduled. Initially, we made the appointment for the same day as my appointment with Louisa in December, but I ended up moving it up a bit.
My appointment is on Wednesday, September 16th. This is a very important day. It is my grandfather’s birthday, so that right there feels like a positive sign. It is also the one year anniversary of when I first met Dr. Wilcox for my initial consulting appointment where I asked him 244353553 questions about cochlear implants. Wow. What are the chances of that?
My mom did a little research already on my health insurance. When I got my first implant I had Horizon insurance which covered almost the entire cost of the procedure. My work decided to switch health insurance providers a couple of months ago to Aetna. This will actually likely benefit me since it is a new health insurance provider that hasn’t already covered this surgery. Also, my mom found in her research that Aetna is known for being a big supporter of cochlear implants. It sounds very likely that they will cover the cost of me going bilateral.
I have a very good feeling about going bilateral. I really think I’m going to go through with it and it will be successful. I think it will be much easier than my initial surgery was. I know that I am a candidate, so I won’t need most of the testing I had to go through the first time around. I know I definitely won’t need a CT Scan and likely not an MRI either since I can’t get them done with my cochlear. I will probably just need a basic checkup with my doctor and blood work done. Other than that everything should be pretty smooth sailing.
Please keep me in your thoughts and prayers as I begin my journey into going bilateral. Yes, I’ve gained so much with my one implant. Some people ask me, “Why would you want to go through with the surgery and all of that again when you’ve already gained so much with just the one?” Here is my answer: two is better than one.
Imagine if you only had one arm and one hand. Yes, you could get by. Maybe that hand would be phenomenal for you. Maybe you’d catch and be able to hold things better than anyone could ever imagine. But would it still not be better to have two hands?
What if you were blind in one eye and could only see out of the other? Try this now: Close one eye and keep the other open. Try to perform a simple task like typing a sentence on your computer. You might be able to do it and do it well. Maybe you even have 20/20 vision in that one eye. Now, try it again with both eyes open. Chances are, you performed the task much quicker and more successfully.
Two is better than one.
I have been doing great with my one implant, but I can’t even imagine how amazing it will be with a second one.
I still wear a hearing aid in my other ear, but it’s as good as useless. Sometimes I forget to wear it. And when I’m swimming, I go completely without it. I never miss it. I don’t notice much of a difference without it.
However, not having my cochlear is a complete tragedy. I can’t hear a thing. There is practically a 100% difference (definitely 90% or higher) difference with having the cochlear vs. not having it.
God gave us two ears for a reason. Mine might not work the way they are supposed to, but through technology I have been given the chance to correct it and make them like new again. My new, bionic ears.
Why wouldn’t I want to seize that opportunity?
Yesterday I had another appointment with my audiologist, Louisa at Jefferson University Hospital. This was for the second half of her music research study. It was the exact same test as I took three weeks earlier except this time I was already exposed to the new music settings on my cochlear. I must admit, however, that I NEVER use the music settings. I always just keep my cochlear on program 1 as that has always been comfortable for me, even when listening to music. Plus, switching programs back and forth can be a little annoying.
Despite not actually practicing with the new music program like I was supposed to, I feel that I did much better this time around. The music did seem a lot clearer. I think the pitches were about the same, but that didn’t strike me as being too difficult in the initial test anyway. I noticed a big difference with the melodies. They were still pretty hard, but I could identify some of them and I have a feeling I got a lot more of them right this time around. The instruments were easier to identify as well. I especially found it easy to pick out which one was the guitar and I could tell the difference between the brass instruments and string instruments pretty well.
After I finished the test I had to answer more questions. They were the same as the ones I answered three weeks ago but not as many. It was just to see how things changed since getting the new music program. Things really didn’t change at all for me though.
While I was answering the questions Louisa told me about another cochlear implant research study that Advanced Bionics will be doing at their headquarters in Valencia soon. This one is for implanted individuals who did not lose their residual hearing. You may remember from my previous post from a few months back that when they tested me post-activation, I still had some of my residual hearing. Louisa did a quick test with me again after I finished the research study questions just to make sure nothing’s changed, and sure enough, I still had my residual hearing and it was the same as when they tested me a few months back. Louisa forwarded my information to Advanced Bionics and they may be contacting me soon about the study if they feel I am qualified for it. If I do get in for it they will be flying me to their headquarters in California free of charge. I never been to California before but have always wanted to go, so needless to say I am pretty excited about it all.
Before I left my appointment I also talked to Louisa a little bit about the AquaCase. I told her that I was using it and even recently used it to go swimming, but I was having a little bit of trouble getting used to it. It sounded a little unclear at times and reminded me of how I had to get used to things when I was first activated. She said that was weird and should not be the case. She also asked me if I was using program 5. I completely forgot about program 5! I always just kept it on program 1. She explained that program 5 was designed specifically for the AquaCase. When you wear the AquaCase, the processor sits in the case away from your ear. For this reason, having the mic on in the processor becomes much less important. Instead, it is far more important to have the microphone in the headpiece on. Program 5 turns off the headpiece in the processor and instead amplifies the one in the headpiece.
Later than night when I got home I gave program 5 on the AquaCase a try. I was surprised by how much better I could hear! I wore it to walk to the gym and worked out in the gym with it on and then after I got my shower and my hair was wet, I kept it on. It definitely made for a more enjoyable walk and a more enjoyable work out. It was really no different than my regular cochlear without the AquaCase. Now I can’t wait to go swimming again! I can’t believe I missed this all before! That just further goes to show you how intricate, detailed, and complex the cochlear truly can be. It’s an amazing piece of technology capable of doing so much that sometimes it can take a bit to fully learn how to use it to get the most out of it. But when you do learn things it’s almost always extremely beneficial. Even after 6 months, my cochlear implant still continues to amaze me with all it does for me.
Image Credits: Fearless Flight
I’m just a little more than a day away from my 2nd appointment with my cochlear implant surgeon, Dr. Wilcox. During this appointment I will have a series of tests done to see how well I’ll do with an implant. One of these tests is a balance test, and I’ll be honest, I’m very nervous and a bit scared of it.
I obviously never had a balance test done before. I never heard of anyone every getting one done either. Actually, I never heard of balance tests until a few weeks ago. I never even knew hearing and balance had any kind of connection until like two weeks ago. Apparently, there’s quite a strong connection…which may explain why my balance is so awful…
I really don’t know what to think about this test. My mom says to just do my best and try my hardest. Of course I am going to try to keep my balance — but I can’t help but wonder if that would be good or not. Is it better to have good balance or weak balance if you want the cochlear implant? Which is expected of me the most? In all honesty, I just want my implant and I’m afraid of messing this up and them saying I’m not a candidate after all…
I posted in the Cochlear Implant Experiences Group on Facebook asking people what I should expect. Everyone says something about them blowing hot and cold water in your ear. How weird. I have trouble imagining how water in my ear can affect my balance…but I guess I’ll find out lol. I also heard they may give me goggles to trace my eye movement to determine my balance? Also weird. That makes me a bit nervous too. Can’t putting water in my ear be dangerous? Can’t that cause an infection? I guess I need to trust that they know what they are doing. I mean they are the professionals after all, right? Surely they wouldn’t do something to cause an infection. I’m just being a bit paranoid.
On the plus side, people have been saying they never heard of people failing this test or having it prevent them from getting an implant. So that’s good, right? I just hope I don’t fall over and make an ass out of myself haha. My balance really does tend to suck…but yeah. Anyway some people say it’s not quite a big deal. More of a way for them to determine which ear they should implant first and to see if I’d need balance therapy after or before surgery. I hope it doesn’t come down to that. That sounds like it would be awkward and annoying, but if it means being able to hear, still worth it.
If any of you guys are reading this who have an implant or are in the process of being implanted, did you have to get a balance test done? What was your experience like?
My test is this Wednesday, November 5th so I’m sure I’ll be updating you all on how it goes shortly after. Wish me luck! 🙂
Image Credits: Diffen.com
Today was one of the last of what I like to call the “stupid waste of time pre-cochlear implant testing”. I had to get an MRI with and without contrast and CAT Scan. I was a little excited for these tests initially because I think they are kind of fun. I’m deaf so naturally the noise doesn’t bother me. I kind of like the way the machine vibrates and I like going through the tunnel. It reminds me of going on a ride at an amusement park or something. I’m weird, I know.
I was originally a little bit worried about the contrast. My dad has a reaction to contrast when he gets it. It makes him feel a little bit sick so I was nervous I’d react to that, too. Also, no one told me that getting contrast = getting a needle until like 10 minutes before my appointment today so I panicked a little bit. I don’t really mind needles, but of course I don’t like them. I mean, who does like it?
The tests both went pretty well though. I wore my Frightland hoodie to to my testing. I love this hoodie because it reminds me of my boyfriend and makes me feel like he is with me. We went to Frightland together and have matching hoodies, by the way. The hoodie is very comforting to me. I was sad when they made me take it off. :(.
The girl who did the MRI was pretty good. I had to remove my hearing aids so naturally I had a hard time hearing. She was very good with working with me and pointing things out/using hand signals to communicate with me (for those who don’t know I never learned sign language, but I definitely rely on my sight to “hear” things…). My mom kept saying “This is the last MRI you’ll ever have” which was a kind of weird thing to think. An exciting kind of weird though. Due to the magnet that they implant insight you, you can’t get an MRI with a cochlear implant. I mean I guess technically you can…but it would require surgery to have the magnet removed. So it’s definitely not advisable.
The testing was a little long but it didn’t bother me. I closed my eyes a few times and I almost fell asleep. The test made me kinda tired and I was already tired from working all day. They put this thing over my face too that was like a mask. Whereas that would probably bother most people it kind of amused me way more than it probably should have. It reminded me of the transformers. Thinking about the transformers reminded me of this Halloween video I saw the other day where a kid has a costume that is a combination of a truck and a transformer. And that made me think of my boyfriend, Larry, since I sent it to him since I knew he’d like it being a truck driver and everything. And that made me smile because I love Larry.
I started to get a little bit bored with some of the testing. Apparently it takes a really long time for them to take pictures of your brain and ears in case you were wondering. I wrote an entire freelance article in my head. It definitely made it easier for when I went home and actually sat down to write the article that I already wrote in my head. I’m so weird. I mean who else gets an MRI done and thinks “Now would be a good time to write a freelance article in my head?” lol only me.
The CAT Scan was much much much quicker than the MRI. Seriously took them like 10 minutes or less. But it was also much, much, much more annoying. Not the test itself but the part leading up to the test. I had a different technician (or is it nurse? Whatever you call those people that do the tests…) and she wasn’t quite as good at communicating with me as the other one was. She had to verify my date of birth and confirm that I’m definitely not pregnant. These two questions would take any one else two seconds to answer…but…I had to have my hearing aids out for the test. So she had to ask me like ten million times before I could actually figure out what she was asking me. Then I was annoyed. Because I already answered these questions on my paper work. And they asked me like a zillion times if I was or thought I may be pregnant. I hate how if you’re a woman between the ages of 18-30 they think there must be a chance that you could be pregnant. I understand why they have to ask and that it’s their job and blah blah blah but do they have to ask me that like 100 times? If I said no the first time I’m pretty sure I didn’t go and get pregnant in the 10 minutes that went by since you first asked lol but seriously…
Overall the testing went well though and once it was over I had three main thoughts:
- I will never get this done again (unless I have surgery to remove a magnet from my head first.
- Soon I’ll be able to hear doctors and nurses and receptionists when I need a medical procedure done and it won’t be so awkward.
- I’m one step closer to getting my surgery! How exciting!
I don’t seem to have any reaction to the contrast or anything which is good. I’ve just been very sleepy. I don’t think I have ever wanted coffee more in my entire life than I did when I got home. I think I was legitimately ready to kill for coffee. I was a bit crazy lol.
At dinner tonight with my parents we talked more about my anticipated surgery and I talked about some things I can’t wait to do post-surgery. I’m thinking in terms of the things I haven’t been able to do due to my hearing. Seeing a movie at the drive-in with my boyfriend is definitely at the top of my list. I also really want to hear a flute. I struggle to hear it now because a lot of my hearing loss is specifically for high-frequency sounds such as the flute. When I can actually hear it it doesn’t sound the way it’s supposed to. It’s kind of annoying and hurts my ears. I’m excited to see how that will change post-surgery. I’d also love to see a ballet. The music played in ballets now is a bit too soft and high-pitched for me to hear. I probably wouldn’t be able to hear a majority of it if I were to see one now. When I mentioned I wanted to see a ballet my mom had to keep correcting me because I kept saying “bellet” instead of “ballet”. I know in my head that it’s wrong but it’s hard for me to pronounce that word right because “bellet” and “ballet” sound so similar to me — almost as if they were the same word with different spellings. But bell and ball sound very different. Is it supposed to be ball – et? I always thought it was more of bell-ay. Or maybe it’s ball but with a higher pitched a in it. That must be it and that must be why I struggle to say it — I can’t hear the high-pitched/high frequency a the right way. Either way I’m excited to hear this word the way it’s supposed to be pronounced after my surgery lol.
My next appointment is with my surgeon on Wednesday, November 5th. It’s all coming up so fast and is so exciting! I can’t wait for the next round of testing and to see what Dr. Wilcox says and hopefully schedule my actual surgery!