After suffering from ear infections and problems from cholesteatomas, Carrie tried treating her hearing loss with hearing aids. After researching and exploring other options, Carrie made the decision to receive a Cochlear™ Baha® System and is learning how joyful and empowering it is to experience the sounds of everyday life.
“My name is Carrie and I recently turned 26 years young. I was a very active child. I played lots of sports, was constantly outside and enjoyed every minute of it. At a very young age, I had my first sets of ear tubes and adenoids removed, like many children in America have done at a young age. The only difference is that my infection kept coming back, even with the tubes in. My right ear would build up wax and ALWAYS get infected. My left ear had become completely healthy with no other problems. I had just graduated high school early in 2012, when I was still fighting an ear infection after a round of antibiotics that normally would have cleared it up. My doctor looked in and said, ’This infection has a lot of pus, we need to refer you to an ear, nose and throat doctor (ENT).’
Cholesteatoma diagnosis
A week later, I was sitting in the sound booth getting a hearing test. I did not remember ever getting a hearing test before. I second guessed everything I said, which I’m sure we all do. This is when I realized that I had hearing loss and so did my mom. The audiologist doing my test caught me reading her lips through the glass and covered her mouth with a folder. I had grown so accustomed to reading lips that I didn’t even know I was doing it.
I was then seen by the ENT who took one look in my ear and explained to me that this was not an ear infection; I had a pretty rough case of a cholesteatoma. He then proceeded to tell my mother and I the risk of having this disease, how rapidly it can grow and how fast it can ruin your ear structure and hearing. The doctor also confirmed my suspicion, stating that I had mixed conductive and sensorineural hearing loss. That day, I received a CT scan to see the extent of the damage that the cholesteatoma had caused. We learned at that time that the cholesteatoma was much larger than expected and had the potential to cause additional damage.
Surgery and new hearing solutions
My surgery, a mastoidectomy, was scheduled a week out for March 21, 2013. I went into surgery that day like planned, with all my loved ones waiting on me to come out. My parents said one hour into the surgery, the doctor called the waiting room and said it was worse than he had originally thought. It would take a few more hours to ensure they got it all. Six hours, that’s how long it took. I was sore, I was sick as a dog and I felt as if I was having an out-of-body experience when coming back too. The surgery was a success, but I lost a significant amount of the hearing in that ear (my right ear). After getting home, it was the typical healing process. Once the stitches came out, I healed pretty well and definitely noticed the difference in the hearing loss.
Fast forward to 2014, my high school boyfriend and I had moved out on our own, and we purchased a car to travel back and forth to work as a substitute at a school for special needs children. I got called into work that morning, so I got up early, but I noticed blood on my pillow. I got up and looked in the mirror and realized that my nose was bleeding. I also noticed my ear bleeding. In a frantic attempt to get myself together, I got dressed, but I called my job and said today would not work for me and explained to them the reason. I waited for the ENT to open and gave them a call. I went that day, and the doctor took a look and informed me that in fact the prosthetic ear bone that was put in back in 2013 to hopefully repair some of my hearing had been pushed out through my ear drum. When I asked how this could happen, he stated that my cholesteatoma had returned and caused it all.
Return to surgery and trying hearing aids
My doctor decided that it was back to surgery. My mother asked my doctor how my cholesteatoma came back if he took all the bone out and there was nowhere for it to grow. He stated that he saved a little of the bone in my mastoid area to hopefully preserve some of that hearing I did have. My surgery was scheduled, and I went back for surgery like last time. The same thing as last time happened. After a little bit of my family waiting, the doctor called and said it was going to take longer than expected. This surgery was over four hours long, almost five hours. This time he took it all out and sent off some of the bone to be tested for cancer since it returned so quickly. The recovery for the second surgery was so much easier and faster. The cancer results also came back negative, thank you to the heavens above. The worst thing about this surgery was that I had now lost nearly all of the hearing in my right ear.
Once healed, my doctor spoke with me about trying out a hearing aid. He said he could not promise success with them, but they could help. I received a hearing aid for both ears and had them for almost three months, went back in for a checkup and I told the audiologist I still had to constantly ask, ‘huh?’ or ‘can you repeat yourself please?’ My ENT and audiologist stated that the only next best thing was the Cochlear Baha System.
Learning about the Baha System
Fast forward to late April 2015 and I was cleared of the cholesteatoma. My doctor told me there was no other concern for it and to just keep my six-month checkups to clean out my mastoid bowl. I was ecstatic of course, but I still couldn’t hear out of one of my ears at only 19 years old. I have a friend that was also a parent of one of my students at the school I was a substitute teacher at that gave me some information about a program that gives hearing implants to pediatric patients in need financially and medically.
I submitted my application paper to my local hospital that night through the mail and received a notice they received my paperwork saying I was approved and to schedule an appointment. This appointment was so much different than any other appointments I had in the past. They were so attentive to all my needs. Once they determined I was for sure a candidate for the Baha System, they sent me to speak with a doctor in my local area. This doctor explained the surgery to me and asked if I wanted the Baha Attract System that uses a magnet or the Baha Connect System that uses an abutment. I picked to have the abutment put in, hoping for less issues considering I was going to be one of the first to receive the Baha 5 System in my area.
The surgery was done May 7, 2015, and it was so quick and painless. I went shopping at the outlets afterwards. There on after, I healed great and had no issues. I received my actual sound processor in June of 2015. Once it was activated, I could hear everything, and I told the audiologist his air conditioner was TERRIBLY loud. He thought I was hilarious. I was just being honest. This implant was going to open a whole new world for me, and once that hit me in the room, the flood gates opened. I was so happy.
Hearing the sounds of nature and planning for the future
I am adjusting to my Baha System pretty well. I am having headaches off and on, but they say it can be from the stimulation of the implant itself. When I first got my implant, I was riding in the car with no music on and we would go through a patch of woods, and I would hear this weird sound. I would ask my husband, ’what’s that noise?’ He didn’t have any idea what I was asking about, then another patch of woods, ‘here it is again, what is that noise?’ My husband then heard the noise and told me it was frogs; I had NEVER heard that noise before. I cried my eyes out over frogs.
Now, don’t think this is all roses for me because it’s not. This pandemic isn’t making life any easier for those of us that still tend to read lips either. I find myself asking, ’huh?’ a lot. I know I have the implant now, but the mask makes everything sound so muffled, the implant isn’t an actual ear.
I have had to send my processor to be repaired a few times, and I am so glad I could take advantage of the warranty system because I would be lost without my processor. I am hoping soon to upgrade to the Baha 6 Max. I have been an assistant teacher for the past seven or eight years and plan to pursue my bachelor’s degree in clinical psychology. I am so interested in the brain and how it works, but still want to work with special needs children so I feel as if that would be a good fit for me.”
Are you struggling with ear problems from a cholesteatoma? Learn about how the Baha System could help you today.
