Our 15th Implant Surgery - a Huge Milestone for Jacob's Ride!

This past month was a huge milestone for Jacob’s Ride. 15 cochlear implant surgeries is a huge accomplishment!

Not only is raising the money an accomplishment, but the level of involvement of Jacob’s Ride is extremely different. This is the first time that we have actually negotiated the financial arrangements with the surgeon and the hospital.

For five years, we have partnered with the Gift of Hearing Foundation who handled this aspect, while we at Jacob’s Ride focused on raising money and riding a bicycle. When their President retired, their Board decided to close the foundation. We are committed to continue the mission.

My life has changed a lot since I got on a bike six years ago. I still ride to commute, but have basically stopped riding recreationally. I am engaged to be married and have different, less time-consuming hobbies. I can now hear with both ears. I could not have imagined this six years ago, yet I could not be happier with where I am today.

The same feelings are for Jacob’s Ride. From the excitement and lofty aspiration of raising $1 million in 2013, to a 2-3 year period of riding across the country again yet being unsure about what the future would hold -  I am thrilled with the role we currently fill.

During the first several years, because of the federal HIPPA regulations, we never were privy to patient information - usually not even names. Now we are directly involved in restoring hope and hearing to individuals with whom we have direct contact. It is very gratifying.

Since 2013, we have financed an average of three surgeries per year. In our new role, and our new application package, we actually have five candidates who have completed the medical testing and have completed the applications. Our goal is to increase the number of surgeries to five per year. In order to accomplish this, we need continued support and donations. Please consider giving one of the most precious gifts of all - the gift of hearing, by donating today.

My Year of Gratitude

The holiday season is one of the busiest times of the year for me, since I work at a grocery store. When I’m working before the sun rises and leaving well after it sets, it’s hard to maintain that attitude of gratitude that is the essence of personal serenity. But the actual holiday is supposed to be all about gratitude. So many times, when I reflect of thankfulness, I usually end up realizing how much I take for granted. 

One thing that surprised me when I reflected on what I was grateful for in 2018 was that I initially didn’t think about my second cochlear implant. It’s been a big year for me; I got engaged, I moved in with my fiancée, I had a lot of changes at work. But during all of that, I got an implant and began using my left ear to hear for the first time in almost 20 years.

Something so incredible is so easy to take for granted. I think the reason for this paradox is that it is such an every day thing for me to hear from both ears. Even after 19 years of single-sided hearing, hearing with two ears is such a natural benefit. Me and my brain love it so much. The coolest thing about it is how much my brain loves it even though the new ear is so challenging by itself. The best way to explain it is that by itself, my new ear only gives me maybe 11% comprehension (might be generous). My old ear is well above 90% in a quiet environment with no lip-reading. 

Even with such a huge discrepancy, my brain is already so conditioned to surround sound. It is such a joy. It is so noticeable when the battery dies in my new ear. I am so shocked at the decrease in the quality of my hearing. I am amazed at how quickly the second implant has given me added richness, fullness, “roundness,” to sound that I did not have before. And this is all with very poor speech discrimination. 

Not only do I have to be thankful for both of my implants, I also need to be thankful for all the fine people I met in all of my travels that guided me in this direction. My life sounds better now.

2nd Cochlear Implant: Post-Activation Day 43

Background

The last time I wrote, it was prior to getting the surgery for my second cochlear implant. I was slightly nervous about the pain of the surgery, but eagerly anticipating activation day. Well, that day has come and passed, and my brain has had almost two months of learning how to hear from the new ear.

Surgery

The surgery went well. It was a cold and rainy February morning. My girlfriend drove me to the hospital. It was definitely nerve-wracking to get ready for surgery. Back in 2016, I was lucky enough to be a guest in the operating room when Dr. Howard Francis performed a surgery, so I was feeling a little bit squeamish. I had been under anesthesia at least 5 other times in my life, so that thought relaxed me. 

It seemed like as soon as I fell asleep, I woke up again. My girlfriend was there and she told me that the surgeon said that it was a success and that I had perfect anatomy. I was given a pain pill and a prescription, and a lot of after care instruction. 

It was more painful than I remembered as a child. One of my friends who has children of his own is fond of comparing children’s ability to heal to Wolverine. Maybe that’s why I remember my surgery from age 10 to be relatively painless. I only took the pain pills for the first 36 hours and discarded more than 50% of the total prescription. I went back to work after only 3 days off - including the surgery date. 

Healing went really well. I had to clean the site twice daily. I felt some occasional throbbing and weird discomfort that seemed to be internal in nature. I had a weird metallic taste in my mouth for about a week. The hardest part for me was the top of my ear being numb for about 4 weeks. It just bothered me for some reason.

I was really surprised at how many people at work approached me after the surgery and asked me if I heard better immediately. I had to explain that I didn’t have the external device on yet and that would be forthcoming.

Anticipation

As activation date neared, I became much more excited. I would be listening to music or something on the way to work and think about how everything would change. I tried to frame my thinking using the word different rather than “better” or “worse.” Whenever I was the passenger in my girlfriend’s car and I had any difficulty in hearing I would think about how hearing from the left ear could drastically change things.

The entire last week of waiting was just filled with giddiness. I invited my parents.

I also had nervousness about the surgery’s success. I had a bad feeling from time to time that when they activated me, they would find out that the electrode array had come out of my cochlea somehow. I was worried because I broke my lifting restriction at work a few times, with 40 lb cases of chicken. I tried to not brace myself too much or hold my breath.

I was nervous I broke the whole thing when I blew my nose in the first two days out of surgery accidentally!

Activation

I went into activation with a pretty good understanding of what would happen. We would stay away from any complicated programming and just give me something to work with. I would be given programs of increasing volume and instructions to go to the louder programs as my comfort allows. I went into the activation with a good idea that I would probably hate how it sounded. The general idea was that over a longer period of time, my overall understanding would be better, especially in noisier conditions. But I went into this thinking that in five years, I still might not be able to hold a conversation with my new ear and that I may never talk on the phone with it. 

I was even looking forward to how bad it could even sound. I liked the idea of being able to relate to people who have had a longer adjustment period than I did when I was 10 years old.

When my audiologist started playing the different-toned beeps in my head, which were very loud, it was amazing. The perception of sound almost floored me. I’m not one to wear my emotions on my sleeve and I found myself uncontrollably smiling - almost laughing. When she finally turned me on to hear my family’s voices, it was amazing how little understanding there was. This type of information was being presented to my brain for the first time in so long and my brain had no idea what to do with it. It felt more like a feeling than actual hearing. It felt like someone was tapping onto my brain. 

Pretty much, even though I ended up going all the way up to the loudest program on the first day, the levels were still quiet enough to where my brain would 100% prefer the old ear. So there was perceptually no difference. I listened to some speaker’s tapes from fellowship to which I had a transcript and tried to follow along with only my new ear. I could just follow the syllables, and even then I would struggle. I tried Green Eggs and Ham which was a humbling experience. 

The next day I went back to Hopkins and we went to the all too familiar sound booth. My thresholds for my new ear were still way below my old ear. My audiologist did some changes, and gave me even louder programming. This was repeated two weeks later.

First Few Weeks

Early on, when my brain wouldn’t tolerate louder programming, it would only use my old ear for understanding. I would only notice the new ear during loud sounds or stressed syllables in speech. I would practice for 20 minutes or so everyday using speaker tapes and transcripts. If my battery died on my old ear, I would wait until absolutely necessary to change it because isolation can help. The eye/brain/eye connection is interesting. If I am isolating my new ear, I am not a good judge of what I am hearing - I can’t identify sounds well. If a conversation is happening behind me, I can’t even tell if it’s speech or non-speech for a few seconds. But there are some interesting ways the brain works. When I hear something and then I look at what is making the noise, my brain then helps out because it knows what it is supposed to sound like. I noticed this the other day when our dog was drinking water. I heard a rhythmic sound and then I saw Libby drinking. Almost instantaneously, the sound became more clear and more familiar. 

As the programming has gotten louder, I have noticed my brain trying to balance the two ears, and I definitely prefer to have both ears on as opposed to wearing only my old one. I feel like I am missing a richness or a fullness to sound when I take off my old ear. So in that respect, I know that decision has been greatly positive thing even though it’s an indescribable perception.  

Breakthroughs

Because I haven’t been doing very much isolating in everyday life, a lot of progress has been unnoticable. I had a really cool experience about two weeks ago when I was walking the dog and my old ear died. I had the baseball game on the radio. As soon as the battery died I thought that there was no way I would be able to understand a single word due to not having any transcript or captioning. But the context of the baseball game gave me enough information because I totally heard “Darren O’Day” and “out of the bullpen” and also “swing and a miss struck him out.” It was so exciting. I didn’t understand anything else. This is after only a month and a half.

Continuing to Practice

It’s hard to practice when living a full and active life but I can tell that it is important. I need to step it back up because it has dropped off considerably. I am also needing to start practice more without transcripts. Having my girlfriend read to me while I alternate between reading and not reading her lips is good practice.

Internship at Johns Hopkins

It’s been a long time since I’ve written anything at all for this blog, but it’s been a very busy time. I have kept many supporters informed of what has been happening via the Facebook page; I’ve also related a lot in personal discussions with other, more intimate friends.

The biggest thing that has happened since I’ve last written is that I did a 10-week “internship” at Hopkins, in which I spent one day a week learning almost everything I possibly could about all aspects of cochlear implantation. The program was designed by Dr. Howard Francis (Vice Director, Department of Otolaryngology) and Debra Bervinchak (Speech and Language Pathology, Rehabilitation Therapy).

Personally, it was sometimes tiring because I was taking a full-time course load in my final semester and I was working 4 days a week as well. But the experiences I enjoyed at Hopkins will shape the future of my life forever.

I saw all aspects of implantation including, but not limited to:

1. Scared and confused people or parents considering an implant in their initial evaluation.

2. Device discussions – patients or parents choosing which of the three companies’ implants to use.

3. Otolaryngological consultations (“get vaccinations up to date!”)

4. Activation days! I found out that those amazing YouTube tear-jerking videos are usually divorced from the truth. Just keeping the magnet attached to a two-year old’s head is difficult when the child does not want to cooperate.

5. Actual surgery. I wish I got a picture of me in scrubs with Dr. Howard Francis. I’m not too squeamish of a person, but it was a longer process than I expected. What made it even more educational was that it was one of the first times a new electrode array/sheath surgical assistive device was being used, so there were representatives from Cochlear America in the operating room as well.

However, the most valuable education I received was in the form of the bulk of the time spent; reprogramming the devices and the post-implant rehabilitation. In those rooms, I learned what the patients were struggling with, the types of questions being asked, and the miracle that was taking place in many people’s lives. The rehabilitation component of implantation is so important, and it seems to be overlooked in a lot of the dialogue regarding implants.  What I learned changed my views for what I can do to be useful. I’ll be keeping this blog going with a post or two per week, and I am hoping to collect feedback as well as pertinent information regarding personal experiences.

I want to finish this post with a long-overdue thanks to the entire staff at Johns Hopkins Listening Center. Not only did I learn a lot just from watching them do their jobs, they would often spend time with me after the patient had left, pointing out aspects of that patient or case, so that I was always gleaming information. Over 10 weeks, I went to more than a dozen each of reprogrammings and rehabilitation sessions. Even though I was seeing essentially the same thing more than once, there was always so much more to learn due the differences in each patient’s individual story and experience.

I also loved meeting all the patients. There is truly a bond between those who have a hearing loss!

Special thanks to:

Deb Bervinchak
Steve Bowditch
Courtney Carver
Kristin Ceh
Howard Francis
Debbie Grammer
Barbara Gottschalk
Andrea Marlowe
Dawn Marsiglia
Charles Della Santina