I am already on my second upgrade of the device. This time just the hearing aide piece I put in my ear and a newer battery which is water resistant. No more battery for surfing and one for wearing everywhere else. I no longer have to carry spares when I plan to surf or choose to surf deaf.
The ear specialist Dr. Niparko, at the Johns Hopkins Hospital, says I will likely have many more upgrades in the years ahead. He installed my first one and the wires which replace my nerve.
Dr. Niparko says “Just like our cell phones and our laptops, cochlear implants continue to improve in leaps and bounds.”
Experts say that while they know that 1 in 1,000 children are born genetically deaf every year, it’s almost impossible to track the rate of deafness over time. Hearing impairment is a spectrum — and it changes.
Diseases like rubella, scarlet fever and measles that caused hearing loss have been all but eradicated with vaccines. But more premature babies with hearing loss are surviving today than in days past.
What is certain is that more than half of the children who once were deaf — for whatever reason — can now hear. My doctor for instance Dr. Niparko has performed hundreds of the surgeries, and calls the cochlear implant “a remarkable technology”.
Dr. Niparko says, It can take in sound waves much like a hearing aid would, but instead of simply amplifying those sound waves … [it] can take that energy and translate it into an electrical code.
The implant works for the vast majority of deaf people, but unfortunately there is a socioeconomic divide that prevents the availability of the device for all deaf cases.
In my case the first device cost about $32,000 and the hospital costs and surgery adds another $21,000. My insurance paid only a portion of that and I paid about $5,000 of the $53,000 out of pocket. Insurance carriers still don’t see the benefit to providing these devices.
Insurance carriers say the technology only has a limited success rate. About 30% of surgeries result in poor results or failure and the older the patient, the higher that risk. Even if successful they don’t consider my 80% normal hearing range as acceptable success.
I consider it a huge and overwhelming success. From 0% to 80% normal range to me is man landing on the moon type of success. Sure I still can’t use the phone and it’s been a long and costly road. But to me it’s worth it and ultimately isn’t medicine about quality of life and not just quantifiable numbers and perceived success rates?
I believe the success should be measured on benefit to the patient and while 70% is not perfect it’s a higher success rate than many surgical options which are covered by insurance. One example is spinal surgery which has success rates of about half or 50%, yet these are covered. And the technology continues to improve.
With the invention and improvement of the cochlear implant technology, all children born deaf and without other disabilities have the chance to be fully integrated into a hearing society more naturally. But it will be a fight to get insurance carriers to fully understand the changes in the life of those who receive this precious gift.
What do I mean more naturally? Well as a former fully deaf person and now a hearing deaf person I used to be able to only speak to one person at a time. Meetings were dreaded because I always felt so embarrassed to remind people to speak one at a time or I can’t follow the conversation. Now today while I do struggle with some things I can follow 2 people speaking at once. Because I hear the noise I also now look to the second voice and follow lip reading better.
My life is greatly improved in group settings and even in singular conversation. Are there still limitations to what I can do? Sure, but the improvements are night and day. The ease at which I now communicate just 3 years after getting my implants was unimaginable to me.
To me the idea I’d be able to follow natural conversation with this ease, well had you told me I’d have thought you a liar. Yes I still lip read as much as anything but meetings are less dreadful to me. Sometimes I choose to turn them off. But that is because I was 28 before getting them and some things are still tough to adjust to. But it’s my choice now when I am deaf and when I am not.
I have cried many times very thankful tears for this gift. It’s hard work, the therapy is expensive as well with speech training, audio training and other therapies. Sure those add to an on going cost. It for me took a dedication that might come easier to children but I did spend 28 years of my 31 years fully deaf. To me there is no price I wouldn’t have paid nor work that is too hard. This gift is that special.
So in the future, could deafness be a choice? Honestly we’re already there and we shouldn’t let socioeconomics to make the choice for us. Yet in today’s world that is the primary factor in the choice. I don’t think the gift of ears should be denied people because the price is exclusionary.
My first upgrade of the device cost my wife and I $27,000 and the first surgical costs $5,000. Therapies and specialist and medical visits another 35,000 at least. This latest upgrade is costing us over $1,500. Add to that batteries and other supplies we’ve purchased another $1,000 dollars. $34,500 on surgeries alone and another $35,000 spent on doctors and therapy but can we put a price tag on the gift of sound?
Not to one born deaf, nor one who has lost their hearing after birth you can’t.
A note or two:
The oral-aural rehabilitation is grueling for an adult born deaf. I’m told it’s easier for children because their brains are developing and built to adapt quickly.
Implants don’t negate the need for sign and people should understand it is not a “cure” because I like others am still deaf at least a portion of the day. Even with extra batteries they can’t be worn to bed.
I am no neither deaf nor hearing, I’m now a hybrid. This is common for this procedure and should be considered carefully when choosing to get or not get implants.
I’ve received more backlash from the Deaf community than the hearing community. The choice to get implants is polarized within Deaf culture. Prepare for the backlash that you wouldn’t expect.
I was picked on some for being deaf but not mercilessly. I am sure had I had implants as a child I’d have also been picked on by other kids. it’s part of life.
Thanks for reading..