Thank you Mishka

I realize your recent blogging has been to examine implants for children, but it has influenced my decision not to go through with an experimental cochlear surgery.

As many of you know, I went for a cochlear implant evaluation last November. Though I don’t hear speech well, I don’t qualify for a regular implant because I have good low tone frequencies. There’s a new, less invasive type of implant in trials called a hybrid, which only has a ten-inch long electrode instead of twenty-four. Because of the shorter electrode, the cochlea remains relatively in tact and residual hearing supposedly isn’t lost.

For those unfamiliar with this new technology, here’s an article explaining in more detail what it can mean to someone like me with good low tone frequencies.
http://www.hearingresearch.org/Dr.Ross/Implants.htm I’ve pasted a couple of relevant paragraphs here.

"Ski-slope" hearing losses are a common occurrence in our clinics, and they always present a hearing aid fitting challenge. Because the person may have relatively good low frequency hearing, it is necessary to ensure that over-amplification of the low frequencies does not occur. Because the hearing thresholds in the higher frequencies are so poor, it is difficult for a hearing aid to provide aided audibility without producing unacceptable distortion or discomfort. Furthermore, as some recent research has revealed, the cochlea hair cells that respond to the high frequencies may actually be missing (cochlea "dead spots"). Amplifying these areas may be more than useless; it may actually be counter productive. While some of these people may obtain some help from a hearing aid (at the lower and middle frequencies) significant hearing problems almost always remain.

Traditional cochlear implants have rarely been considered an option for people who fall in this category. Almost always, the insertion of a long electrode into the cochlea results in the destruction of the surviving hair cells. Perhaps some people who elect this route would wind up better off, even with the loss of their low frequency residual hearing, but then again perhaps not. It is not a chance that many people are willing to take.

I should add that testing phase two for this hybrid closed last fall in the US, and we’re currently waiting on the FDA to approve testing phase three, which may happen sometime this spring if all goes well. I met criteria for phases one and two. Because the FDA hasn’t yet approved test three, I was told there was no guarantee that I would qualify for phase three. The FDA had the prerogative to change test guidelines. However, at this point there is no reason to believe they would change criteria, so I am on a wait list.

I had some initial qualms when I learned I met the criteria. First of all, a small part of the approval process was based on whether one benefits from hearing aids. My hearing aids are nearly eight years old. Though my aids were state-of-the-art when I bought them, the audiologist who administered my test suggested I might be happier with new hearing aids because several advances have been made in the past decade.

Nevertheless, the audiological evaluation took two hours and was more thorough than many I’ve been through, however not the MOST thorough I’ve sat through. I’m not sure how to put this. I picked up on some vibes from the audiologist. I really didn’t think she wanted to add me to the wait list, but the surgeon was more than happy to. I might be wrong about that. I’m an intuitive person and wanted to talk to her some more, but there wasn‘t time. I have since found out that audiologist has left. Maybe I‘m reading more into this than I should. I don‘t know what to think.
Next, I had a consult with the surgeon who performs the experimental surgery. When I asked about risk the of the hybrid, he glossed over the usual risks of surgery, discussed risks of implant surgery, and finally got down to statistics on the hybrid. Fifteen percent lose their low tone residual hearing in the first year. Considering the whole point of this technology is to PRESERVE low tone hearing, I thought that was a rather HIGH rate of failure. Then he went on to say about five percent end up with WORSE hearing than they started with. I asked about newer hearing aids, and he said I would hear much better with the implant-- if it worked. No guarantees of course.

As we left I told my husband I wasn’t sure I wanted to go through with it. He agreed, though tried to remain upbeat. I had a few months to decide, he assured. Later I said the same thing to my dad. His reaction was immediate relief. I didn’t realize how much he had been stressing over the possibility of experimental surgery.

Still. . . I wasn’t sure I was making the right choice. I want to hear. My work is suffering because I deal with the public on a daily basis and I rely on lip-reading with my hearing aids. I hate my hearing aids. They‘re uncomfortable and I have a lot of sound distortion. My hearing is still declining. Anyone with an ongoing hearing loss understands the constant struggle. You’re always adjusting to new lows and readjusting. There’s fluctuation. Tinnitus comes and goes whenever you have a major drop, which also comes and goes. An implant would mean stable hearing on at least one side.

I want to say in NO WAY do I wish to sound as if I'm judging others for their decisions to get a cochlear implant. We're all different with different needs, different bodies, different life experiences. I'm looking at EXPERIMENTAL technology here. If you're a parent of a Deaf child, I can't judge you. I haven't walked in your shoes. My children are hearing. Because of my own deafness, I believe I would have enjoyed raising a Deaf child. Would I wish progressive hearing loss on any of my own children? NO!

For the past several years I’ve been treated by my family doctor, an ENT and a neurologist for excruciating migraines and sinus headaches. While several friends and relatives have suggested maybe the migraines are caused by stress of hearing loss, my neurologist believes the migraines are not psychological. That's OLD science, he says. Most migraines are caused by biological swelling within within the brain. In my case, they are possibly related to sinuses and allergy or an old neck injury.

After reading Mishka’s articles, I realize getting an experimental implant surgery would be adding more fuel to the headache fire. More than a few implantees admitted to Mishka that headache problems resulted from faulty mappings. I’ve seen examples of this first hand myself-- people I know with implants holding their heads in wincing pain. One person I know has had horrible electrical pain running down one side of her face from a faulty electrode. Another I know has been living with cochlear failure for months. I've heard horror stories of testing that rivaled childbirth.

The thing is-- if you read the article it all sounds pretty rosy, doesn’t it?
Then yesterday I went to see my sinus ENT for the first time in several months. Glancing over my chart, he saw the report from my visit to the Cochlear research center last November.

“What’s this all about?” he asked.

.
“Experimental Hybrid Cochlear Implant.” I said.

“EXPERIMENTAL? BE CAREFUL WITH THAT.” he warned.

"I'm not doing it." I told him. It wasn't until that moment I realized I had made up my mind.

I’ve always believed in fate and messages from angels. Someone’s trying to tell me something. Thanks Mishka. You're an angel.