One Week!

It's been one week since my surgery, and I feel almost back to normal. I'm off the antibiotics, and I'm only taking pain meds before bed so that I can sleep more comfortably through the night (after one bad night when I forgot and had to stumble out to the kitchen at 2 a.m. with my head and ear absolutely throbbing). I'm no longer feeling as much pressure in my inner ear, so burping/sneezing/ yawning aren't as uncomfortable. I still do have to be careful about blowing my nose, though. The doctors told me to avoid it for the first few weeks if at all possible, but the other day I ate too much spicy salsa, so my nose was really running. It's a feeling I typically enjoy, being an all-around hot food obsessive, and I got a tissue and gave a tiny little blow before I realized what I was doing. Whoops. The pain was instantaneous, the pressure unbelievable. It felt like a soft, expanding balloon had slammed against the walls of a metal box, precariously close to bursting. Or like my ear was a tender slug being crushed underfoot. Needless to say, I decided to dab at my nose and let it run!

I've been spending my days at home, indoors for the most part, reading and writing for hours at a time. I'm not allowed to be physically active or to lift more than 20 pounds for another week or two, just to allow the surgical site to heal. It's hard to restrain myself when I've been feeling so good, but the fact remains that my body still isn't completely back to normal. I can now turn my neck almost its full range without soreness, but the muscles on my left jaw are still stiff, and there's a constant tenderness beside my left ear. I can get up without dizziness, but something in the back of my mind cautions me that it's best not to walk too fast. If I'm on my feet for too long, even just unpacking or doing dishes, my head starts to throb. A strange edema has persisted on the left side of my head, a pouch of fluid above and behind my ear. When I press on it with my fingers, it literally gurgles and shifts to a different place beneath the skin on my skull. The first time I discovered this physical sensation, I was horrified. It was like sloshing water, or gel, around in a closed bag. Compulsive icing has helped the swelling a bit, though.

My left ear is still numb, a veritable slab of meat. I can pinch it without pain, just as I remember gleefully biting my inert tongue after local-anesthetic procedures at the dentist when I was a child. Strangely enough, my tongue has been affected as well: the left side has gone numb. The doctors told me this might happen right after surgery, but it's only emerged in the last few days. As a result, I can only taste on the right side of my mouth, something which has made meals decidedly less savory. It's as if someone rubbed off all of my left taste buds with sandpaper, leaving only a smooth, dead surface. I'm wondering if the swelling beside my ear could be constricting the nerve signals that pass to the rest of my head. And, if not, hopefully those sensations will come back with time.

Minor annoyances like these are all I have left to deal with: swelling, loss of sensation, headaches and fatigue. Pretty remarkable when you consider where I was a week ago. I'm not sure how much of my headaches are from the fact that I can't hear from my left ear. The ringing and tinnitus have all but stopped at this point, thankfully, but my right ear continues to bear the full burden of the sounds I do hear. My brain is not used to this, and sometimes listening to and interpreting noises can seem overwhelming, like a gigantic beast is standing over me gnashing its teeth. Come on, leftie, help me out a little! But it doesn't. It won't for another week and a half, and then it'll have its own problems to deal with. Sometimes I get so short-circuited that I have to go off by myself and sit in silence for a little while. I don't mind this.

One thing people have been asking me is how much the CI will help my hearing, when I do turn it on. What percentage am I expected to recover? What will I be able to hear? The answer, quite honestly, is that there is no answer. I'd feel better, too, if I could pin down an exact number, like 75 percent - it's true that there's something reassuring about numbers. But, in truth, the only thing I know is that it will likely be better than what I had before the surgery. That term, "better," is a slippery word. A trickle better, or better in life-altering proportions? A lot of it depends on me: my biology, my body, my perseverance, my desire. It will not come all at once. The reassuring news is that most of the people I've talked to and read about with CIs say that the quality of their lives improves after the implant.

Again, I guess that's what this blog is for, to track exactly what changes for me and how. Maybe several years down the road, with objective testing, I'll be able to calculate some bogus figure that states how much I've improved. But it will be applicable only to me and my journey, not to the workings of the implant itself. In any case, I'll be able to look back at what I've written and know - hopefully - that the decision I made was the right one.

The Sounds of Silence

It's been four days since surgery and I can't believe how good I'm feeling. I'm on my feet, no longer feeling as dizzy when I walk, and back to chewing most foods. Reading no longer gives me a headache, and the pressure wrap is off my head. I finally showered yesterday - the high point of my weekend, believe me! The CI is now a sore spot on the left side of my head, nothing more. Though I'm still on antibiotics and pain meds, and though I get tired more easily than normal, I'm so pleased at how quickly I've progressed. It's been a Godsend. Most blessedly, the ringing in my ears has stopped. For the most part. Someone told me that now I know the gist of the Simon and Garfunkel song, "The Sounds of Silence." Indeed I do. And I hope that pulsing, echoing, buzzing silence never returns - good riddance!

Now that I'm rested and my head is clear, I think it's time to try to make sense of what's happened to me since last Thursday.

The true miracle is that I was as calm as I was the morning of the surgery itself. A bit of Benadryl did the trick for sleep the night before (my anxiety-ridden self already hadn't been sleeping well for several nights), and I woke up in the hotel feeling remarkably relaxed. It's funny, though: regardless of how occupied I kept myself, with books and email and conversation, as the time drew closer my chest started to tremble. It's as if my body couldn't forget what was about to happen to it, even if my mind traitoriously did. (I'm sure the fact that I hadn't eaten since some ice cream late the previous night had something to do with this. I wasn't allowed to drink, either. Watching my parents eat breakfast only increased this physical tremulousness, and my lovely father was so nice as to tease me with the full water bottle he was drinking. Bad move, buddy.)

After taking a short walk in what ended up being a gorgeous California morning, we headed to the hospital.

(The BEFORE: my last moments with my left hearing aid. Notice the brilliant weather outside. What a sad day to be detained for surgery!)

I'll say it again, the Stanford hospital is a very open, airy, welcoming place. Once inside, I was still floating in a self-imposed cloud of calm. But even so, my nerves were rattling. Evidence: lipreading while I checked in at the ambulatory surgery front desk (and afterwards, while chatting with the nurses) was much harder than usual. I felt myself stammering, my eyes losing focus, trying to keep my anxiety in that nice little box where it could not escape. Once checked in, we waited and made pleasantries together in the waiting room until I was finally called back into pre-op.

My pre-op nurse was very kind and chatty, just what I needed despite needing to answer her list of obligatory questions. No, I don't have heart or liver problems. No, I've never been pregnant. No, I don't do recreational drugs. The only issue I confessed to was a fear of needles. We made small talk about Stanford and the area, about books and English. Several times she asked me, in response to my physical stature and cardiovascular signs, whether I was an athlete (a question that many other doctors and nurses asked over the course of the day, apparently). I smiled and said, yes, an equestrian. I don't know whether she knew what to make of that!

(After verifying for at least the fifth time, my surgeon marks my left ear as the one to be operated on. Yes, those are his initials. They refuse to wash off completely, even several days later.)

Another source of reassurance: hearing about my surgeon. He's a kind, well-respected guy - something which I could have guessed from my personal encounters with him, but something that was only confirmed several times in pre-op. My nurse, a operating room nurse for 30 years before moving to pre-op, told me that he's the only surgeon she'll work with for OR shifts these days. "He's the best," she said. "He treats us all so well. He's such a gentleman!" And, after he slipped in with a smile, talked to me for a moment, and gripped my hand, I tended to agree. The feeling that I was in good hands made such a difference.

(Trying to look confident even if the whites of my eyes are showing. I wouldn't be smiling if they'd put the IV in yet!)

By far the most stressful part of the entire day was getting my IV in. But we'll skip over that. (A summary: I managed not to faint.) A little more nervous small talk with my parents in pre-op, while trying to ignore the tubes and appendages connected to my body, before it was time. The nurses rolled me out, down the hallway, and through a series of automated doors. I felt almost as if I were being kidnapped.

I don't remember much of the operating room itself (thankfully) except that when I got in, the fear was starting to flow. I stared up at the lights overhead, which looked like huge suspended disks, and thought only of just how many shiny metal surfaces (read: knives and needles) were in the room. The doctors and nurses were all wearing masks, probably speaking to each other, and there was no way for me to hear or lipread them - I remember telling myself to remain calm, even as my subconscious screamed that I might as well have been transported to an alien planet -

Finally, the guy nearest me pulled out a pad of paper and wrote, "What's your major at Stanford?" I answered that it was English. He took a second and wrote, "Literature or composition?" We chatted a little bit, like that, and I felt a huge surge of gratitude for his perception and thoughtfulness. It was possibly the most human moment of my entire day. Then someone pulled out an anesthesiologist's mask, I breathed three breaths, and that was it.

I woke up feeling the typical post-anesthesia dreaminess, like I had been away for a hundred years and had only just been transported back into my old life. Only, of course, this wasn't any semblance of life that I recognized. If I felt any kind of emotion, it was annoyance. More specifically, annoyance that the blood-pressure monitor on my arm kept going off. If there's one thing that makes me shudder, it's a blood pressure cuff. The tightening and releasing pressure was my primary link with reality for almost an hour, until I asked the nurse to please make it stop. (Of course, she didn't.)

After a while, they had me roll over on my back from my right side. At one point a nurse came in to take a X-ray of my skull, to verify that the implant was in the right place. Apparently, it was. Overall, besides some nasty business with nausea during the later stages of recovery, the entire thing went excellently. The nurses had me change back into my clothes and wheeled me out of the hospital around 7:00pm. My parents and I returned to our hotel room, where I staggered into bed and made them promise not to poke or otherwise bother me. Then I was out.

One other thing I should mention: according to my dad, when my surgeon came out to the waiting room he was smiling broadly. While I was still under, likely still in the OR, he had fired the implant itself to see if the nerve connection was functional. And my nerve fired in response. It fired! So, looks like whenever I turn this darned thing on, it'll be working.

(The AFTER: my lovely Princess Leia cap and bandage.)

As I've already written about, I felt remarkably good the day after surgery, but unfortunately by the second day my energy level had dropped. The ringing in my left ear, which started on Friday afternoon, was unbearable by Saturday morning. I wasn't in pain, but felt too weak and dizzy to really stand up. I spent 80 percent of the time sleeping. Whatever I did, while waking, was consumed by that aggravating, bewildered, cerebrally-confused silence. My parents and I decided to travel home from California that day, regardless - though my head wasn't too pleased at the jolts and bumps of the truck ride, I was pleased that it learned to deal.

(So happy not to have a bandage on my right ear - and to wear my hearing aid besides!)

It still does feel strange to hear out of only one ear, and admittedly I've caught myself fiddling with my left side, as if expecting my left hearing aid to be there, turned off or otherwise asleep on the job. It's as if I'm searching for a ghost limb. Since the programming on my hearing aids doesn't give exactly equal sound and frequency input to each ear, I've been feeling off-balance at hearing only half of what I normally do. It's easy to feel detached from the events around me, too, or to inadvertently not pay attention to what's happening on my left side. Especially since the muscles in my neck are still sore and I can only look right.

(When the bandage finally comes off: a tefla pad covers the stitches on my skull.)

After three days, yesterday afternoon I could not wait for the bandage to come off. Besides the fact that it was getting uncomfortable, itchy, and my hair was starting to smell, I couldn't wait to see what my head actually looked like underneath it. We'd taken a few glimpses, of course, while readjusting the bandage and plastic cap, but the skin was still too tender to touch. What I found was slightly strange.

First of all, my left ear is still numb. There are no medications inducing this; it's just that the nerve sensation near the tip of the pinna is almost completely gone. My dad thinks that might be an unavoidable consequence of surgery, cutting a few sensory nerves on the way to drilling to the cochlea. Maybe I'll get the feeling back on that ear, but maybe I won't. When I touch it, it feels like a plastic ear. My fingers feel it, as normally as ever, but to the rest of my head it's as if the ear itself - my ear - is not there.

Second, the incision the surgeon made for my CI is so small. It's just a line of stitches behind my ear, and they barely had to shave off any hair. Remarkable. It should heal quickly, and the stitches should dissolve and come out within 10 days of the surgery. I marvel at the skill of the surgeon, to do so much work within a space of less than an inch and a half.

Third, and perhaps most creepily, is that I can feel the CI internal processor and magnet on the side of my skull. It's just a small lump, under my hair, and smooth - still a bit tender, but doesn't hurt. I can't stop my fingers from running over it. This, in a few weeks, this will be the interface between what happens in the outside world and what I experience inside my body. There's no incision on top: the surgeon must have slipped it into the single cut he made, then worked it up between my skin and the surface of my skull. It's all so elegant, so deftly done, that I almost can't stand it.

But this is a new definition of reality, and many marvels yet remain. Onward and upward!

The Start of Bionic

Well, I survived!

Anyone who knows me knows that surgery (and hospitals, and doctors, and needles, and blood, and... etc.) is not high up on my list of favorite things. So I'm pleased to report that I am not only bionic now with the CI, but bionic and not feeling too unlike myself! Besides some nausea and general unpleasantness coming out of the anesthesia, the whole thing went smoothly. Three cheers, the scary part is over!

Granted, there are still some hurdles. I have a swaddle of gauze and a protective plastic cap over my left ear, which someone said makes me look like half of Princess Leia. It's to reduce swelling, and will stay on for three days. So far that swelling has been very, very minimal - the doctor said I might get a black eye, but so far I haven't. No other complications like they warned me about, either - no nerve damage, no alteration in taste or facial motility (I know, weird). The color has also returned to my face, and when I gaze in the mirror I look almost like my normal self. The good news is that my nausea is already gone and my appetite is back. It does hurt to chew, seeing as the muscles of the jaw are suspended along the side of the skull, so I'm on soft fare for the time being. Lots of ice cream! No complaints there!

By far the most annoying part is not being able to wash my hair for three days - lovely. Sleeping is awkward, since I can only lie on my back or my right side, and whenever I roll over or move I have to do it gingerly. I also have to be careful when I get up, since my balance and inner-ear equilibrium are out of whack. But I feel so, so much better than I thought I would. The skull itself doesn't have very many nerve endings, so the pain and swelling is minimal, especially with the pain meds I'm on. I'd say that, compared to this, the pain from getting wisdom teeth removed was far worse.

The CI is in there. And I know it. More specifically, I'm aware that something has changed in the structure of my inner ear. It's strange. When I burp or sneeze, the pressure inside is unbearable, and I can also feel a faint throb on the side of my skull where the device is (I imagine) sitting and biding its time. This afternoon I've also had some unpleasant ringing in my left ear, which I've read is normal, but still disconcerting. It's actually not like ringing at all - in that it's not a sound, exactly. It's more like a physical consciousness of the absence of sound, like my brain is desperately searching for auditory input but not finding it. As I sit here typing, I feel my skull pulse and echo with the silence. It consumes me. It's like a whirling kaleidoscope, or like falling into a black hole, a gaping emptiness that has a physical presence more concrete than sound itself. I've been wearing my right hearing aid, my left one lying useless on the dresser, and that probably makes the contrast worse. But I can't sit here with this silence: I have to hear something. I can only hope that this strange, dizzying emptiness will fade - but perhaps it won't, until I fill its gap with sound.

And, speaking of sound, I can't wait. The CI is in, the deed is done. Now I have no reservations - how could I? There's no going back, so I'm diving into this journey as far as it'll take me. Turn-on? Bring it on. Just over two weeks of post-surgical recovery before I actually hear.

Tonight I'm spending one more night in the hotel before heading home to Albuquerque with my family, given that I continue to feel this good. A more detailed recap to follow, once I'm back in my own room and my own bed with the swaddling gauze off my head!