It was a struggle, it took me 6 long months of constant phone calls. I got lots and lots of run around. The one that seemed to be everyone’s favorite was “It’s going to take longer if we can do it at all because you’re making an out of network request”.
Say what?? The CI surgeon/implant center that I was requesting the authorization for testing from is the ONLY one in Oklahoma that is part of my HMO’s system! Of course, when I pointed that out, they said “Well yes, but he’s not in Tulsa” Sigh.
Finally, after much runaround, I was at the point of totally losing my patience, but a long ways from giving up. Then I got the letter that the rest of the testing had been authorized.
I really have no idea why after dragging their feet for 6 months, suddenly it was “all go”. I think there were several factors. I know that my implant center was very very helpful. I also know that my primary care physician and his office staff was pushing them hard for me.
And I had just offered to take my story to the Tulsa World Newspaper, which I honestly think made at least a small difference. I’d done that once before when they refused to pay an ER bill for my son’s asthma attack. I meant it, and they knew it.
My CI audi got the rest of my testing scheduled very quickly. The CT scan and ABR were simple and painless, but the hours in the sound booth were totally exhausting. I keep thinking that maybe nanotechnology could one day also be beneficial for my problems and not only will be developed for the oil industry.
I met and talked to my surgeon, and he checked my head to see if there were any problems there. All my test results came back as they should and YEAH! I was a cochlear implant candidate (see also How Cochlear Implants Change Lives-Part 1). I was trying to be realistic, but I was walking on air! And my education could be fine as well again!
I fully expected my insurance company to put up another battle for the authorization for surgery, but they surprised me, and a week later my surgery was scheduled! My emotions were this huge mixture of excitement and fear and so many questions. Would it work? Would it change me? How were people going to react to me?
Before I tell you about my surgery, I want to stress that only 1% of all people who get CI’s experience the intense pain that I did. Most people have very little pain, some nausea from the anesthesia, and some dizziness for a few days. As my CI audi, who acted more like a self-employed consultant, put it “You just have to be different!”
Finally, surgery day arrives, and I’m strangely calm. We get to the hospital at 7 for the preop stuff and the receptionist is a mumbler who when I ask her to look at me when she speaks, looks at me like I’m stupid, then looks back down at her paperwork and asks me another question. Sigh, I know it’s going to be a long morning.
From check in I go to the lab for blood tests, where much to my surprise they are excellent to look at me when they speak. A few vials of blood later I’m on my way back upstairs. From there, things moved very rapidly. I was soon in the preop preparation area where an IV was put in, and I was given some drugs to relax me and started on antibiotics.
My surgeon came in to make sure I was ready and to answer any questions that I had. He’s a great guy and I found his visit reassuring. He told me that even the International Pediatric Association recently published about this case. Next, the anesthesiologist came in to explain what he was going to do. Then it’s off to the surgery room. It doesn’t take very long for them to put you under, there’s really no time to be afraid.
The next thing I knew, I couldn’t breathe, not at all. This was absolutely the scariest feeling I’ve ever felt in my entire life. Then a paper appears in front of my eyes that says, “COUGH HARD!” And wow, such relief. I can breathe again! Another sign. “Good,” it says, “Your doing great!” I don’t feel great for sure. I feel like I’ve been kicked in the head by a mule. More signs, they ask things like nausea? Dizzy? I answer No to all of them, saying only that my head really hurts.
The pain in my head is starting to grow, and I ask for pain medications but they are reluctant, probably because pharmacies today are so engaged in fighting prescription drug abuse and dependency. The nurse says, “As soon as we get you to your room.” A long bumpy ride on a gurney to my room. Standing shaky legged and into bed. The pain in my head with every movement is like someone’s slamming me with a baseball bat. I tell the nurse again. She says “I’ll go get you something for the pain.” Another nurse comes in with a needle of stuff to put in my IV. She says, “This is valium for nausea.” I say “I’m not nauseous, my head hurts, bad!” She says, “We’re bringing you something for that.”
They come to get me for x-rays and I say, “Wait I want my pain shot first, I really, really hurt.” And they say, “This will only take a couple of minutes.” I say, “NO”, but no one listens. The pain is now very intense, I was so anxious to get out of here! I feel every bump of the gurney wheels. After what seems like hours I’m finally back in my room and I grab the first nurse that comes close and say, “I want a pain shot now!” Ahhh finally, sweet relief.
The next day my surgeon checked and rebandaged my head and I was on my way home. The first week I was really in a lot of pain. After that, I had no pain at all. Just a VERY long 4 weeks wait until hookup!
Finally, hookup day is here! My CI is connected to my audi’s computer and he does some things. “Hey that sounds just like scales on a piano”, I say! It’s so neat, every note so clear. Then he tells me that he’s going to start talking, and he wants me to turn the volume up till I can hear his voice. I’m really scared. What if I can’t hear anything? What if I went through all this pain for nothing?
I turn it up very very slowly. My audi is frowning just a little. He looks over at the volume button and laughs. “Turn it UP” he says! Okay okay, time to be brave. I turn it up farther and I hear bubbling and gurgling sounds, a really weird noise. My audi smiles and says, “Keep going!” Then wow! Oh, those are words! Not sounds or bits and pieces of words or the robotics I expected! I can hear him! I’m amazed! These people are really pioneers in improving the lives of other people!
I’ve been totally deaf for 15 years. And now suddenly here are these words just there. Like reading a book the words are there. No more taking bits and pieces of words and sounds and putting together to try and figure out what’s been said to me. I just know! I can hear! And I know at that very instant that the pain was worth it. That if this thing ever needed to be replaced, I’d be banging on the hospital doors begging them to implant me again. I’m convinced that the doctors felt much career satisfaction as well, no doubt!
And it’s only gotten better since then. I spent a lot of the first few weeks saying, “What’s that?” There were so many sounds that I’d not heard in so long I’d forgotten what they were. I’m now at 6 weeks post-hookup. Most people’s speech is very clear to me talking one on one. In a small group I never lose track of the topic, but sometimes miss some of what is said.
Before my CI I avoided groups at all cost because I felt so stupid sitting there not having the faintest idea what people were even talking about. I can hear music again! Not just the noise, but the lyrics and most of the instruments. When I found I could hear music again I sat for hours and played all my tapes of my favorite oldies, and cried. My use of the phone is still pretty much limited to family members and friends. People that I know will be patient with me. I’m still rather afraid of it, but I’m getting there.