This is a series that documents my journey to getting a cochlear implant. These posts are honest and vulnerable. Please refrain from posting negative comments. These are my experiences and each CI journey is different for everyone involved.
Written June 27th
June 8th, 2016
Today would be the day that I would meet the surgeon who would hopefully perform a miracle of giving me the gift of sound again. I have been really nervous about this appointment since we started this journey. I knew this was going to be a make it or break it appointment. This was the day that would determine whether we would move forward or if we would stop the process.
I had work in the morning and then the appointment was scheduled for 2pm at a hospital in the suburbs. All morning, the what-ifs were racing through my mind. I worry. I know I shouldn’t, but I do.
2pm came around.
My STL mom met me there. I am so blessed to have her. She has been there for me and has looked out for me this last year. I was so grateful that she was able to come to this appointment with me because I didn’t want to be alone. I hate being alone especially when big decisions are being made.
I got to Dr. B’s office and checked in. Everyone was so nice and willing to help. It made the appointment a little less nerve racking. The other thing that I loved about his office is that they are so prompt and always on time. At 2pm on the dot, they called me back and off to the exam room I went.
Dr. B came in and introduced himself and made some small talk. He saw my Wash U ID and asked if I was the one that he got the e-mail about to help. I said that I was and he was more than willing to get this going. He looked in my ears and then left to go look at my CT scan. This was going to be a big determiner if this was even possible. Sure, I have tried to read it and figure out what I am seeing, but I don’t specialize in ENT things. I didn’t really know for sure.
When he came back in, he said that my case was a pretty severe case, but he was confident that it is possible. Dr. B was confident that he could get the electrode in there and that I would be able to get percept from it. He did say that he isn’t 100% sure of what he was going to find when he gets in there, but that he was confident that he would be able to do it. Hearing this was a huge relief. Knowing that it is possible and I have a chance was a huge weight off of my shoulders. I had been walking around for a few weeks not really knowing if it was even going to be possible and now I had hope again. He did say that he wanted to do a MRI to check the auditory nerve. Because of my cochlea abnormalities, he wanted to get a more in-depth picture of what we were working with. He wanted to get as much info as possible before he cuts me open!
I asked him if it would be worth the risk of doing it knowing that we weren’t really sure what we were going to find. Dr. B. said that this is really my only option at this point. He was kind of surprised that I didn’t get one earlier due to the severity of my hearing loss and the abnormalities. I am also at Wash U and I probably won’t be here past May 2017. Why not take advantage of these world-class people at my fingertips right?
We then went on to talk about the procedure. He said that because of my other medical issues, we were going to need to do it at the hospital instead of having it being an outpatient thing. He wanted to be safe rather than sorry. That is why I respect him. And just the fact that he is a leader in the field of cochlear implants. Dr. B said that he would like to go with Med-El because they have a few different options in terms of electrodes and he wants to order a few different types so he has a back-up. He said that he isn’t going to know for sure what is going to work until he gets in there. Dr. B wants to have as many options as possible. Med-El wasn’t my first choice, but at the end of the day, the brand comes down to what is going to work the best surgically. And if that is Med-El, I am more than willing to do it.
Dr. B has done about 1500 implants, 150 of them being severe cases, so he knows what he is doing. My case is one of the more severe cases, so he can now add me to his list. After hearing him say this, I knew that if I ever needed to implant my other ear at some point, I would fly back to St. Louis just to have him do it. It is worth every penny because he is that good. I am so blessed to have met him and to literally have him at my fingertips.
After the appointment, I called my mom to fill her in. She was excited that it was now possible. We both had been holding our breaths for the last month not really knowing what was going to happen. We both felt this sense of relief knowing that we had a plan. We had hope again.
June 24th, 2016 – MRI Follow Up
Today would be the day that I would find out my fate.
I was nervous to say the least. Luckily I had a wonderful friend that was willing to come with me for moral support!
I picked my friend J up about an hour before as it was a bit of a drive to get out to his office. Dr. B travels around to various hospitals in the St. Louis area and on this day, he was at an office way out west. We chatted in the car and caught up on life. I hadn’t seen her in a few weeks, so it was nice to have that upbeat attitude while going to such a scary appointment.
We arrived at the office and the waiting room was packed. I had a hard time hearing so I asked J to listen for my name. We didn’t have to wait too long which was surprising. They called us back to a room where we waited once again.
Finally, Dr. B came in to go over to MRI and talk about the procedure. He revealed that the defect was more severe than he originally thought, but he was still confident that he would be able to do it. The MRI showed that I have an outer wall of the cochlea, but the inner wall is barely there. The auditory nerve is okay and I only have 1.5 turns (typically, you should have 2.5 turns). Dr. B also shared that my vestibular system was enlarged and wasn’t formed correctly. The term in the ENT world that we use for this is Mondini’s Dysplasia. He did share that one of symptoms of this is to experience sudden hearing loss at some point, so he was not super surprised that this happened now knowing this information. I went on to ask him what the situation was in the left ear. I have always had better hearing in my left ear, so I thought maybe it was more formed. Unfortunately, he shared that it looked almost identical to the right except for maybe being slightly more developed. I then asked the dreaded question: Do you think this is going to happen to the left as well? He shared that he wasn’t sure, but because of the enlarged vestibular aqeduct, it is very possible that it will happen.
We started talking about brands and he said that Med-El was really the best and only option that he was willing to do. I suspected this and I was okay with that. Med-El actually has some really nice devices. They were the only brand at the time that were MRI safe and I really liked how flat their headpieces were. I would be getting the Sonnet External, which looks very clean and sleek. There are no controls on the actual processor which makes it simple. There is a controller that comes with it that allows you to change settings and so on. I was happy that this was the outcome, but still terrified of what would come.
We went on to talk about the procedure and what to expect. My mom had told me these horror stories that many of my CCHAT friends had half of their heads shaved and a massive scar, so I was envisioning loosing half of my hair. Luckily, this wasn’t the case and shared that it would be a little incision behind my ear. The procedure would take around 2 hours to complete and he wanted to do it at CAM (Centers for Advanced Medicine) to have backup in case he needed it. He also shared that he wanted clearance from my Neurologist and Cardiologist, so I was physically healthy and okay to do this. Dr. B also shared that he wanted to plan on doing it outpatient, but he was also going to reserve a room for me to stay a night in case things did not go as planned. Since I have a history of heart issues, you never know how that is going to go with anesthesia. Let’s be real.
Then, he shared the risks and all of those scary side effects and things that could happen. To save you some fear, I won’t share them, but let’s just say, I was a little freaked out. Was this really a good idea? Am I really sure that I wanted to do this?
We conclude the appointment and I was on my merrily way. This would be the last time that I see him before the surgery. However, we couldn’t schedule the surgery because we didn’t have insurance approval. The next step was convincing them that it was medically necessary!
To be continued…..