post-op

R-r-r-recovery

Oh man, y’all.

I had NO idea it would be this rough.

I had surgery on my hand a few years ago: anesthesia, scalpels, the whole works. Immediately after leaving the hospital, Matt and I spent the next several hours rolling on Swedish ecstasy. (We went to Ikea.) When we got home, I followed some confusing-as-fuck cartoon directions and put together our newly purchased dish rack with one hand. ONE HAND.

Does that not sound like SuperPatient to you?

Not only that, despite getting prescribed an insane amount, I took only one Vicodin throughout my entire recovery, favoring Ibuprofen the majority of the time. The nearly full bottle of Vicodin is still in my medicine cabinet, collecting dust, its yellowed label chastising me for not accumulating the five (now outdated) refills. Yeah, that’s right, I could easily have had hundreds of Everyone’s Favorite Painkillers/ Party Fun Time Pills, but I opted not to take them. Because I’m not a pussy.

See? SuperPatient.

The implant surgery, like my hand surgery, was outpatient, meaning I’d go home the same day. The surgeon, whom I met weeks earlier, described the procedure as simple and easy. Naturally, I expected my recovery to be a breeze. After all, I was SuperPatient, a pro at this surgery-having thing. There was a Gino’s East Pizzeria across the street from the hospital, so I told Matt that we’d be going for spinach deep dish pizza right after the surgery. Also, I’d be driving to Ikea (hand surgery shout-out!) the day after to get some new curtains. And I’d paint the baseboards! And I’d write a lot! And I’d dance around the house in my underwear and tank top, catching up on tv shows and eating gallons of ice while I “recovered!”

When I woke up from surgery, I quickly realized my kick-ass recovery wouldn’t be going as planned. The simple acts of eating two saltines and walking ten feet made me vomit with enough force to flush the toilet without pressing the handle. When the nurse asked me which number face I was feeling (you know the chart: the one with ten faces listed one through ten. The ‘One’ Face looks like it’s saying, “Gosh darn it, I feel fantastic!” and the ‘Ten’ face looks like it’s saying, “Pull the Plug. Now.”) I whimpered and said, “I don’t know that I’ve ever felt a ten before. This might be a ten but I’m going to say …… seven? Eight?”

Suffice it to say, I didn’t go to Gino’s that afternoon.

I don’t remember much of the first few days, other than feeling miserable and out of it. My head, ear, and teeth pulsated with white-hot heat. My throat was so raw I could barely swallow. I could hardly stand without the room spinning and my stomach somersaulting. After a couple days of constantly sleeping on my right side (my left ear was implanted, so that side of my head was stitched and stapled and sore), my neck stiffened with so much pain that it refused to move from side to side.

Around day four, my neck and chest began to turn yellow and blue. Matt called the hospital to ask what could cause that sort of coloring and they replied that though it was unusual, it could mean that my blood was pooling downwards from my ear. Excuse-a-what did you say? Pooling? Downwards? Where’s it going? Does it have a mind of its own, like The Blob?

When Matt came home from work on Friday and asked how I was feeling, I wept. I wasn’t recovering with my expected gusto, I felt dismayed that I had to depend on drugs (tramadol) to get through the day, and I was angry that it was taking me so g.d. long to feel any semblance of normalcy.

He sat down next to me, squeezed my hand, and said, “I’m so sorry. I know what you’re going through, believe me, and it sucks. This week feels endless and you’re frustrated and tired and you’re hurting. This will be over soon, I promise. I’m so sorry I’ve had to be at work most of the week, but now it’s the weekend and I’m here for you, 100%. I love you so much. Would you like me to make you some pizza?”

Those were the EXACT words I needed to hear to get through the rest of that evening. The man makes damn good pizza.

I made Matt call the hospital again on Saturday to see if they could prescribe me muscle relaxers: I was barely getting any sleep due to the agonizing state of my neck. When Matt said that my neck was stiff, they responded that it could be a sign of meningitis, one of the risks of getting a cochlear implant. Cue the panic and googling.

After much research, I decided that I probably didn’t have meningitis (I didn’t have a fever and it didn’t hurt to touch my chin to my neck, two major signs). Because of the meningitis mention, the muscle relaxer request had been forgotten, and it was too late to call back the hospital. There was no way I could sleep another night with my neck whispering to “eeeend iiiit, eeeeeend iiiit aaaaall, Liiiiindsaaaay Jeeeeaaaan, theeeere’s sooo maaany kniiiives iiiin theee kiiiitcheeeen.” So I researched neck pain remedies.

I came across a description of a traditional Chinese method called Gua Sha, which involves repeatedly scraping lubricated skin with a blunt edge. Intrigued, I smeared jojoba oil on my neck and forced poor Matt to scrape it with the edge of a spoon until my skin turned purple (the purple marks are caused by stagnant blood rising to the surface. Google pictures at your own risk).

Guess what? I shit–pardon my French–you not, it worked. I immediately felt 1000x better and was able to move my neck in all directions with ease. I slept like a baby that night and when I woke up the next morning, I felt like a new woman. That’s when I knew that the worst was over. Each day, I’ve felt increasingly better and stronger.

A big thank you to my friends and family for their support and outreach, the kind words and flowers, the love and sympathy. And a special, dear thank you to Mattie, my loving husband, for helping me get through a rough week.

P.S. One more week before my implant gets–ahem–turned on! (Ugh. I hate that phrase so much.)

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pre-op

The First Step

I burst into this world healthy, pink, and insanely adorable, only to contract a staph infection in the hospital where I was born. The medicine the doctor used to save my life destroyed the nerves in my cochlea, resulting in severe-to-profound deafness in both ears.

For those of you unfamiliar with audiology terms, there are different degrees of hearing loss: there’s normal (best), slight, mild, moderate, moderately severe, severe, and profound (worst). I’m severely deaf with certain sounds and profoundly deaf with others. So, basically, I totally blow at hearing. If there were such a thing as hearing contests, and I for some reason entered one, I’d walk away with a shame-soaked participation ribbon peeking out from my back jeans pocket.

But–I don’t give a crap about winning hearing contests. (After all, there are plenty of other hypothetical contests I’d kick ass in…. parentheses contests, for starters.) I’ve done the best I could with what I’ve had. Thanks to my parents, who sent me to a school that employed a fabulous system called Cued Speech, I was able to become quite adept at reading lips. That, along with a positive attitude, helped me get by in the hearing world. It’s not that I rejected the deaf world. I just was never around it much, mainly because of the choices my parents made for me. The hearing world was, and still is, all I’ve really known.

When I was about twelve years old, I was told by an audiologist that I’d be a good candidate for a cochlear implant and had I ever considered getting one? Um, you mean shave my hair and wear a magnet on my head? I’m about to start the seventh freaking grade–I don’t think so! ::snaps gum::

Seven years later, after I began college, another audiologist told me the same thing. No longer bogged down by teenage insecurities, I briefly considered it, but ultimately felt too overwhelmed at the prospect. I was dealing with college and the untimely death of my mother. The thought of having invasive surgery at that point in my life, not to mention the amount of therapy and hard work afterward, sounded downright terrifying. Plus I had it in my head that there’d be a cure (stem cell nerve regeneration) any day. Having a cochlear implant would mean destroying my cochlea—making any cure moot.

At the age of 26, when I first started dating my husband Matt (who is hearing), he asked me if I had ever considered an implant. I shrugged –not really. When he pressed, he quickly realized I knew next to nothing about cochlear implant technology. He knew more about it than I did after reading about it for a few days and couldn’t understand why I had never researched it. I hedged his questions with vague responses. He quickly dropped the subject, after sensing my discomfort. He didn’t want me to feel like he needed for me to “change.” He loved me the way I was.

I didn’t research cochlear implants after that conversation, despite secretly being curious. I’m not sure why. I think a part of me was scared. Scared of the surgery, scared of it not working, scared of getting an implant and finding out shortly after that there was a cure on the horizon, scared of having a magnet on my head, scared of being too old. I felt a little stubborn, too. Why did I need to hear better? Wasn’t I already doing a good job of acclimating to the hearing world?

When I was 29, I met with a new audiologist to upgrade my hearing aids. Like the previous audiologists, she told me I’d Be A Good Candidate For A Cochlear Implant. This time was different. I didn’t shrug it off. See, she was born deaf, like me, and had gotten a cochlear implant in her early thirties. And what’s more, she loved it and said it was one of the best decisions she ever made. I found her story so inspiring. This conversation planted a seed in my head that slowly sprouted over the next couple years.

A few months ago, shortly after my 32nd birthday, I met with her again for a hearing aid repair. I asked her a few questions about her implant and admitted that I had been thinking about getting one. She nodded approvingly and gave me the email address of a cochlear implant audiologist from Northwestern Hospital. I went home and stared at the email address for a long time. The first step. Was I ready to take it?

I was.

And now here I am, my head throbbing, my hair matted with blood, my eyes glazed over, my stomach in knots from vomiting repeatedly, my face bruised and puffy, my throat bloody from the tubes shoved down my throat during anesthesia—recovering from the cochlear implant surgery I underwent yesterday morning. And I’m smiling.

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post-op

Getting “Turned On”

Lindsay hates the phrase (when applied to the implant process), but it’s what everyone uses.

The moment when the audiologist attaches the processor to the implant for the first time is known as “turning on” the device. Getting “turned on” marks the first time a deaf or hard of hearing person experiences sound through the device. The implant itself does not provide the hearing…in order for the implant to send signals to the cochlea, you have to have an external processor, attached to the implant with a magnet through the skin.

Yep. A magnet. The implant has one, and the processor has its match – currently (depending on the maker or processor), a little disc that accepts input from the microphone (usually inside an over-the-ear device) sends signals through the magnet into the processor, and then to the cochlea and brain. Here’s a more in-depth explanation.

You’ll find lots and lots and lots of videos of people getting “turned on” online. And they’re either tear-inducing…or vaguely uninteresting. Only because the experience is different for everyone, and personal reactions vary, we’re told. We will be able to report more on this in a couple of weeks.

And of course we’ll have our own “turn on” vid, in a couple of weeks, whether the world wants it or not.

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tech talk

Waiting for Tech

Waiting for new technology to arrive on the scene feels like a new phenomenon. At least, at the rate that it has been going in the past ten years or so. Growing up, I don’t remember waiting for the new iPhone every year. But I do, now. I’m not the type to whine and moan about our world becoming a place where we’re addicted to the newest technology, because I have found that you’re either interested in the newest and greatest gadget, or you’re not, and it doesn’t have to rule your life.

That being said, it’s interesting that LJ is in a situation where she’s waiting on technology before she gets the CI. In May, Advanced Bionics came out with some  upgrades that were approved in the States, upgrades that have been OK’d by the rest of the world for a year or so. (That darn FDA! Keeping us safer, but taking a lot more time doing it?) The biggest improvement is the newest implant device, which they are calling the Hifocus MidScala Electrode. The names that AB comes up with are super-confusing to me, still, but from what I gather this electrode is smaller, less intrusive to the cochlea (which means that there is a larger chance that the operation won’t affect LJ’s natural hearing), and more “future proof”. It has 16 current sources, where other companies offer up to 22, but they advertise this thing called current steering, which is a bit complicated to wrap my head around. From what I understand, the electrodes fire at different current levels, which stimulate sections of the cochlea differently, better approximating what is happening in a hearing person’s ear. Instead of more electrodes firing only in one place in the cochlea, the current steering tech sends the more current to where the sound frequency might be, and less through electrodes nearby, which might provide a fuller sound?

Once again, I’m hoping that anyone that knows far more about this than I do can chime in and educate others as to the function of these devices. And I’ll certainly be learning a lot more as I go along…I’m really excited to be able to correct my ignorant self in the future.

So that’s the new implant, and it’s great timing for it to be out and approved a month before the operation. However, the downer is that there is also a new processor that has been released everywhere but here, and as of today (July 6, ’13) it hasn’t been approved. Lindsay got an email from the audiologist asking her to choose which processor(s) she wanted to start out with by next Monday. Otherwise, she’d have to postpone the surgery, because they have to have one processor in hand for post-op.

The new processor is the awkwardly-named Naída CI, but it really looks like a huge upgrade to their last over-the-ear model, the Harmony CI. It’s smaller, comes in nicer colors, has a better microphone. With add-ons, it has a sync capability to Bluetooth devices. It’s also the first device that is coming out of the Advanced Bionics/Phonak collaboration; Phonak being one of the leading hearing-aid companies, there is talk of the two companies being able to build a cochlear implant/hearing-aid hybrid and will especially be nice for those that either are bi-laterally implanted or have a CI in one ear and a hearing-aid in the other. LJ doesn’t have Phonak hearing aid, but could get one in the future. This is another reason she went with Advanced Bionics; at this point in time they just seem to be ahead of the game.

This Naída CI is the obvious first choice to go with, but the danger is that it won’t come out in time…at this point, less than 20 days away. And she has to tell Mickie the Audiologist which processors she wants to start with by Monday. The original plan was to get two of the same processor, so that parts can be interchangeable (batteries, cables, etc.), but there is no point in getting two of the older processors. Once she starts using one, it can’t be returned.

Mickie suggests that she get one of the current processors, and choose a certificate that can be traded in for the newer one when it’s ready. The only other AB option is the Neptune. Completely waterproof, it’s built for highly active people (and marketed mainly to kids, who are more active, I suppose) and people who like long baths. Lindsay only falls into one of those categories, so the Neptune wasn’t really a viable option, at first. But if the Naída takes longer to come to the States, it might be a good start. There are other nice things about the Neptune, besides it being able to be sweated on: it doesn’t have an over-the-ear element to it (which would be a nice thing for her since she’s lived with OTE hearing aids for her entire life), it can be worn a bunch of ways (with clips and headbands and even a lanyard), and it can be color-coordinated to her outfit with a series of snap-on covers. Sexy.

LJ asked for my advice and I really couldn’t help. So I went to the source.

Edie Gibson is an Audiologist and Senior Consumer Specialist at Advanced Bionics. She also lives in Atlanta, and it was great to hear her slight Southern accent when I talked to her on the phone. I was able to ask her any question Lindsay and I had about the three processors AB offered at this time, and really appreciated her frank and candid answers. Edie told me that the advances offered in the new processor (the Naída) were so great it just made sense to wait for it to be approved by the FDA and take the chance that it’ll be ready by her “turn on” day. And that it’s currently an option to pre-order two certificates that can be traded in for the new processor, and not have to have an older one at all. IF it takes far longer for the FDA to say “yes” to the Naída, Lindsay can still choose one of the older processors and it’ll be in her hands the next day. Probably the Neptune, for both bath-times and the color-matching options.

So we’re set. After the operation there is a two week healing time before you can attach a processor to her implant, so hopefully the timing will work out. Crossing fingers! If someone reading this has any pull with the FDA, would you mind putting in a good word for approving the Naída CI Q70 for us?

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