I love this photo. It is of my sweet boy practicing with the anesthesia mask before he went back to the operating room for his first cochlear implant. It was a traumatic time…for me. I was deathly afraid of the experience, even though I had put much prayer and research into it and knew it was the right thing for our family to do. I knew it was an elective surgery, however, so I feared not being able to forgive myself if something went wrong. As you can see from the second photo, the surgery really wasn’t traumatic for Ben.
This is him the day after surgery. He was almost 5 1/2 years old, and had only been part of our family for 10 months, having been adopted the previous year from China. Ben is 12 now, and has been asking for a second cochlear implant for almost two years. At first I hesitated, because I thought he just wanted a second one because he had a friend who had two. Also, our insurance was not approving them at the time, stating that they were not medically necessary.
He has persisted in asking, saying that he wants to hear with both ears, not just one, even praying about it regularly, asking God to find him a good surgeon. In the meantime, our insurance company has come to its senses, as people have pointed out that everyone has two ears, so why not two cochlear implants to help you hear with both ears instead of just one? Blue Cross is now deeming bilateral implants as medically necessary. Because Ben has not had stimulation via a hearing aid to that ear for 12 years, he might not do as well with it, at least in the beginning. Then again, I know other children who also didn’t have stimulation to their second ear but have done well hearing with their second implant. We tried a hearing aid on the second ear for awhile after his first implant, but he hated it since he got no benefit whatsoever, and he hated wearing an ear mold.
Ben has Mondini’s dysplasia, with his cochlea only have 1 3/4 turns instead of the normal 2 1/2. His first implanted ear is the same, however, and he can hear between 5 and 10 dB in the sound booth even with the first 6 electrodes turned off. They are turned off because with his cochlea having less turns, they could not place all of the electrodes inside the cochlea. He also has enlarged vestibular aquaducts (EVA) that affect balance and are also a cause of progressive deafness.
We drove to a surgeon a couple of hours away because I was not real comfortable with the only surgeon in our town who does cochlear implants on children. Due to Ben’s difference in anatomy with his cochlea, I wanted someone who had more experience. After meeting the surgeon and asking him many questions, I feel comfortable with him. He trained at House Ear Institute in Los Angeles and does about 60-70 cochlear implants/year. I had been warned by 2 people that he was very arrogant, but perhaps they have not dealt with as many surgeons as I have since I worked as a nurse. I’ve met arrogant surgeons, and I would describe this guy more as confident in his abilities and a bit enamored with himself. He took his time with us and answered all of my questions without me feeling rushed, so I think we will be a good match.
We have chosen the Freedom CI which is made by Cochlear corporation, as its internal device has the highest reliability ratings of any cochlear implant. He currently has a Freedom external processor on his first ear, but a Nucleus 24K inside, which is a bit older technology. With his new implant, he will have the Freedom inside and out. What I love about Cochlear Corp. is that they never leave a patient stranded with older technology. Anytime they have new and improved external processors, they make them compatible with any of the older internal devices, so that all of their patients can benefit.
The surgeon wants to keep Ben in the hospital overnight as a precaution due to the Mondini’s and EVA. I’m OK with that as it is always better to be safe than sorry. Kids heal so fast from this surgery, however, it is amazing. With his first implant he went to the O.R. at 7:30 in the morning, they were done by 9, we were discharged by noon and by 3 p.m. we were having to stop him from jumping from an ottoman in our hotel to the bed.
We’re just waiting now for insurance precertification and then we can schedule the surgery. I’m hoping it comes in time that we can do it over his first school break week which is the week of Labor Day. Unlike his first surgery where we waited 4 weeks to turn it on, this one will be turned on in about 4 days. The surgical technique is different and more advanced with the only scar hidden where the ear meets the skull. There is far less trauma to the tissue in this type of incision, so doctors can turn them on much sooner than they used to. Ben won’t even have his head shaved at the surgical site this time around.
It will be interesting to see how he progresses with his second implant. I’ve seen some people take off and others struggle to get used to the sound through the second ear. At least this time around we know what to expect and he will already have good sound and comprehension coming from his first implant.
If you would like to know more about the benefits of bilateral cochlear implants, go here to read about them as well as here to watch some amazing videos on bilateral implants and the benefits of binaural hearing.