My Personal Transition from Hearing Aid to Cochlear Implants
My brother and I were born with bilaterally symmetrical profound (95 dB HL PTA) and severe deafness (85 dB HL PTA), respectively. Although no other past or present family members were ever identified as having a hearing impairment, our deafness is genetic in nature; we were identified as having the Connexin-26 gene, so each of our parents was deemed a carrier of this genetic mutation. This means that my son, who has normal hearing, is also a carrier for this cause of non-syndromic recessive deafness.
Neither my brother nor I ever learned sign language. We were trained to develop our listening skills and to speak the English language in a natural way. The auditory-verbal pioneers convinced my mother that we could learn to use our hearing for all practical purposes. So, our mother became our best auditory-verbal teacher. Our father became our staunchest supporter and bedrock of strength. Our parents were devoted to us and taught us well.
Our aided thresholds were typically in the 30-40 dB range. We were fully mainstreamed back in 1950, starting with me when I began kindergarten at five years of age. We've always worn high-gain linear hearing aids, and my brother still does. Moreover, early in our lives, we became excellent hearing aid users and learned to use regular telephones quite well during our elementary school years, with the help of an amplifier on the handset. Throughout the years, our respective hearing losses remained largely unchanged.
My "good" ear (LE) is the one that was aided for my lifetime; my "good" ear was auditorially trained. Unfortunately, my other ear (RE) was essentially not used even though my hearing thresholds were the same in each ear. Given that I was amplified at CA 2 years in 1947, well before either early or binaural amplification became widely practiced, my unilateral amplification is understandable. In effect, my "bad" ear atrophied over time.
However, a few years ago, for my belated fiftieth birthday present, I suddenly lost quite a bit of my residual hearing, about 15 dB. Interestingly enough, my instantaneous hearing loss occurred only in my amplified ear (while I happened to be on the phone talking to my father). At the same time, a roaring low-frequency tinnitus came upon me; it sounded like a never-ending rumbling of clickety-clacking trains. To say that I (as well as my family) was devastated is an understatement. I entered the hospital for a few days to try IV steroids and other medical treatments. Nothing had the hoped-for effect of restoring my hearing.
Three weeks later, I underwent my first surgery - my good ear was implanted with the Clarion. Three weeks after surgery, I experienced my first initial stimulation...my "turn-on" to electrical hearing. The 24-hour roaring noises in my head abated, having been replaced by the static noises that I heard when people spoke to me. I was inconsolable and cried daily for one week, but my tears became less and less during the second week. I gradually became acclimated to electrical stimuli. After this two-week transition period, I was re-mapped and then suddenly again happily able to use the telephone.
However, unbeknownst to me, I contracted a staph infection as a result of my first surgery. The pain became increasingly worse. The intolerable pain eventually caused me to stop using the implant in my auditorially-trained ear. Due to insufficient follow-up medical care, my stimulator ultimately (nine months later) extruded from behind my ear. Therefore, the Clarion was explanted at the same time that a Nucleus-22 was implanted in my other ear.
After weeks of IV antibiotics and a prolonged period of healing, it appeared that my skin had sufficiently healed and I was declared free of that staph infection one year later. I then underwent a third surgery - I had another Clarion (S-series) re-implanted in my auditorially-trained ear. While binaural implantation means that I am now totally deaf insofar as acoustic stimuli is concerned, my auditorially-trained ear has 'saved' me in that I can make effective use of electrical stimuli, therefore still being a functionally hearing person and still using telephones.
For me, the biggest advantage in using two implants is that everything sounds louder...the "binaural summation effect" as audiologists call it. Regardless, I don't use both of my processors most of the time because it's very uncomfortable and inconvenient to wear two bulky processors. As soon as I can secure a BTE processor from the manufacturer of my cochlear implant, then I intend to be wearing both processors all the time.
As someone who once heard well with hearing aids, I find that one of the disadvantages of implants is not enjoying the bass sounds as well as I used to, or of not easily discriminating among such low frequency sounds as /m/ and /ee/, and of not understanding men on the phone with as much ease as I did before. If I had a choice, I'd still have just a severe loss and still be able to wear a hearing aid in my auditorially-trained ear. However, I genuinely enjoy being able to hear those high frequency sounds (such as /f/, /s/, /k/, /t/, /sh/, /p/, /h/) much more clearly now than I ever did before.
One more thought about myself...I treasure hearing so much that I willingly paid for each and every one of my implant surgeries. Paying out-of-pocket for three implants is no small feat. While I had an individual health insurance plan, I was not covered for anything to do with my ears or hearing due to the exclusion on my individual policy. Such are the vagaries of not being part of a group health plan.
- With eyes open wide,
- Ellen aka EAR
- Ellen A. Rhoades, Ed.S., Cert. AVT, CED
- Auditory-Verbal Training & Consultation Services
- ellenrhoades@comcast.net