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the pain diary (ear saga part deux)

It’s been too long since I’ve given you a medical update here on the blog. If you’re my personal friend or Facebook friend, you probably know what’s been going on. But if not, I feel like I should let you in on something…something quite crappy going on in my life.

Remember that surgery I had? The one to fix my hearing?

I thought it would be a life saver. And maybe, eventually, it will be. But right now, I wish I had never done it. Because now, you see, I’m worse off than I was before. Before I was going deaf and now I not only need to wear an earplug 24/7, but I also have mind-numbing pain. All. The. Time.

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Let’s take a step back. The surgery was to repair my going-deaf ear by replacing one of the tiny ear bones with a tiny titanium prosthetic. The surgeon said it went fine and that I was recovering well. But I insisted I wasn’t “recovering well”, because I was still having pain.

“I’ve never heard of this,” he said. The words still echo through my mind nine months later. “You should not be having pain this long after surgery.” After a few post-op visits, and hearing tests that proved I was, in fact, gaining my hearing back, he dismissed me with those final words. He wouldn’t prescribe me any more painkillers and insisted on a regimen of Aleve.

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I wept my way to the parking lot in a blur of tears. He didn’t understand; couldn’t understand. Aleve? Aleve wouldn’t cut it. I was not, and am not, addicted to painkillers, for Christ sakes. This was–is–real pain, cutting through my ear and reaching up behind my eye, yanking down my neck like some devil’s hand. It never goes away. Morning, noon, night–pain.

I have a life to lead. A life that was going along swimmingly until I lost my hearing; a life that was going along great until the operation. My two tiny girls have a mommy who is cranky, deaf and frustrated.

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It sounds like I’m blaming the surgeon. Maybe I should be, and maybe I shouldn’t be. I have no diagnosis to go on. I’m just so fed up, living with day-to-day pain. I’ve been to four other doctors—three more on the docket in the coming weeks, including the Mayo Clinic in Phoenix—and no one can give me an answer as to why this pain is occurring. I’ve had MRIs, CTs, massage, cranio-sacral therapy. I manage on a regimen of painkillers that I loathe— they make my mind foggy and sleepy. I don’t want to live on pharmaceuticals, but right now they’re the only things I’ve found that makes the pain manageable. They don’t even fully take it away, just numb it a bit.

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The worst part? Sound makes the pain worse. The simple banter of my daughter requesting eggs for breakfast is murder; if I must attend a loud event I’m screwed for days. I’ve become a recluse, mostly avoiding social situations when I can. The world is loud, and it won’t stop being loud. I don’t blame it. I want the world to be loud–I just want to be a part of it. I want to hear it.

I wear an earplug at all hours of the day. It irritates my ear even further and everyone stares at me curiously. I don’t listen to music. I don’t watch TV. I don’t go to movies. I used to enjoy these things—they used to make me happy, make me relax, and now I can’t.

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I’m back to where I was—deaf—but worse than deaf. My other ear, the one without the earplug, is deafer than it was before we discovered the disease (otosclerosis), and it’s degenerative. My poor children and husband have to repeat themselves endlessly to speak to me. We should just get pads and pens to communicate. The only thing that keeps me sane right now is this—writing—but on the painkillers my brain gets foggy and word recall is sometimes difficult. I think I’ll lose my mind soon.

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My dear Lucy with a paper necklace she made for me. Notice the oh-so-fashionable purple earplug.

I worship those of you who have been living with chronic pain for longer than I have. I don’t know how you do it (how do you do it?). There are so many people worse off than me—I’m just being a pathetic whiner.

But I do feel as though I have to tell my story in case there is someone out there reading who is experiencing the same thing. If that’s you—if you have otosclerosis (conductive hearing loss)—thoughtfully consider your options. It’s such a delicate area to operate on.

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Stay well. Hug your kids. Call a friend. Blast your music. Go to movies. RSVP YES! to that party. Listen to the traffic and the birds and the lawnmowers. I hope that I will be able to again, someday soon.

Xo

Jenny

sorry, what was that?

Post-surgery update below…read on! 

For the past year or so, I’ve been turning the volume up. Not metaphorically. On the television, the car stereo, the iPod dock–everything needed to go up an extra notch (or two, or three, or ten) in order to be heard. I didn’t even notice I was doing it.

Then one day a few months ago, Dave came downstairs. The girls had gone to bed and I was watching a show in the TV room.

“Honey, can you turn that down? It’s waaaay too loud.” He had heard the television all the way upstairs.

I clicked the volume control down a few notches. It had been at 30; Dave usually watches around 12 or 14. But the trouble was, once I turned it down, I couldn’t hear it. The action scenes were loud enough but I could barely make out the dialogue.  “Huh,” I thought, “Guess I’m getting older.” I chalked it up to years in the noisy restaurant industry and blasting  my car stereo as a teenager. A few more weeks passed.

But then I noticed myself becoming that annoying person–the person who has a hearing problem but refuses to acknowledge it. The person who says “huh?” or “what was that?” to everything you ask them, or simply nods and smiles in mock understanding like a foreign tourist. I was losing my hearing.

Lucy and I enjoying the breeze on the boat.

After a few more television incidents and gentle pleas from my wonderful husband, I went to get my hearing checked by my family doctor. The simple, old-school headphone test revealed moderate to severe hearing loss. I was devastated, standing there with a referral to the audiologist in my hand.

In the audiologist’s office I was put into a booth with some crazy earbud probe-y things (probably their official name) and given a series of tones. Then the same series of tones with white noise behind them. Then strapped with pressurizing headphones behind my ears (on the hard part, between your ears and your hairline) and given the same sets of tones.

The doctor’s conclusion, according to my test results, was that I have a disease called Otosclerosis. The stapes–one of the tiny bones in your middle ear–becomes overrun with tiny calcium deposits, which make it static and unable to conduct the vibrations of sound. The good news, she said, is that it’s completely reversible with a simple surgery.

It was good that I went in when I did, because in the last few months–weeks, even–it’s gotten exponentially worse. I have trouble following conversations. The volume on my iPhone turned all the way up barely makes conversations audible. Even with the baby monitor on my nightstand, sometimes I don’t hear Charlie when she wakes up in the morning. I’ve gotten really good at reading lips out of necessity.

I can’t wait to hear the full force of Charlie’s screams. Wait, maybe…

 

I met with the surgeon, discussed my options, and booked the procedure. This Thursday I go in for the surgery in my right ear. They’ll remove the bone and replace it with a prosthetic. Chances are high that after a few weeks I’ll regain hearing in that ear, and if all goes well, I can have the other ear done in a few months. I’m hopeful that I’ll no longer live in this muffled world.

It’s depressing, frustrating, and isolating to live with the volume turned down. Now I understand why many elderly people simply tune out, or become exasperated with the world around them. When you can’t hear it’s like you’re not really there. And you really want to be there–to be a part of everything that’s going on around you–but you can’t. I never thought at 30 years old I’d be going through this, but I feel incredibly lucky that there’s a solution and I won’t have to live with it for the rest of my life.

I’ll update this post after the procedure and let you know how it turns out. I’ve never thought I would be so excited to check myself into the hospital. Wish me luck, and hopefully next time I see you, I’ll be able to hear every word that you’re saying. I really, truly can’t wait for that day.

Update: day after surgery

I’m home now, snuggled up with my puppy and my laptop, thankfully dosed on pain meds and something for nausea.

Yesterday went something like this: wake up (starving–not allowed to eat or drink before anesthesia), check into hospital, wait (starving). Wait some more, seriously contemplate attacking the guy across the waiting room eating an apple and stealing it. Count the number of coffee shops within walking distance that would make me a lovely americano. Wait some more.

A gruff male nurse leads us into a curtained-off area with a reclining chair. Takes blood pressure (it’s really low and I begin to freak out), asks a series of questions I’ve already answered a million times, slaps me with a wristband, all the while speaking in mumbling tones, unaware that I’m here for surgery to repair hearing loss. He becomes frustrated when I ask him to repeat himself. Dave and I stare at each other with knowing irritation. Gruff nurse instructs me to change into a series of enormous gowns and robes and socks. Thankfully he leaves me to it and draws the curtain. Dave and I laugh and take pictures of the awful 80’s print that I’m swimming in.

Layers upon layers of bad 80’s print. I call it the “Full House” surgery look.

An hour goes by before we see anyone else. Dave jokingly offers me his finger to chew on. It smells like the girls’ shampoo from their baths the night before and suddenly I miss them terribly. Then everything happens at once: another male nurse comes by, nicer this time, and speaks normally. I still have to read his lips but at least he’s looking in my direction. Same series of questions again, but he jokes about it and it makes me less tense. He leads us downstairs to Pre-Op where a nice older nurse named Penny hooks me up to an IV and tells me about her grandkids. We tell her about our kids. I start to relax.

The anesthesiologist comes by and explains the drugs: he’ll start with an oxygen mask, then once I’m asleep, a tube will be inserted down my throat to continue the flow of gas and also help me breathe. I sign the release. The surgeon comes by and initials the ear he’ll be operating on. One of the OR nurses comes by and introduces himself; he has on a Spiderman cap and I relax some more. He jokes with me and we get along. I’m suddenly struck by how rare a specimen a truly great nurse must be–you have to be expert at the science side of things, but also wonderful with people. I’m a fairly brave gal, not easily jarred, and here I am freaking out about a day surgery. Somehow Penny and Spiderman ease all my fears.

Spiderman carries my IV down the hall toward the OR. I kiss Dave goodbye and he tells me I’m going to do great. The OR looks exactly like you’d imagine if you’ve ever seen a hospital show–bed in the middle, various stainless steel carts full of instruments, nurses “scrubbing in”, oh, and the giant laser that they’re going to shoot into my ear to sever the problematic bone. My heart starts to race. Luckily they don’t let me take in this scene long–Spiderman and the anesthesiologist get me right down on the bed and he injects something into my IV “to help me relax.” And boy, do I relax. Immediately. The world goes hazy, and he puts an oxygen mask over my face.

“Can I see the bone? Afterward?” I mumble through the mask. Am I making sense? Did I really just say that? I tried to.

“No,” everyone shakes their heads. “There won’t be anything left.” Did they say that? An image of the laser incinerating the bone flashes through my head.

“Oh,” I say, or try to say, and then the world goes black.

I wake up in Post-Op on a stretcher. A nurse is over me. “Hi, Jenny. How are you feeling?” I’m woozy, and my throat feels like a cotton ball.

“Water?” I ask. She obliges, and comes back with the best tasting glass of ice water I’ve ever had.

“Do you have anyone here with you?”

“My husband. Call my husband.” They were supposed to call him when I was out of surgery–he walked over to work during the procedure and was going to walk back when he got the call. No one called him. She gets the number from the computer and phones him.

“He’s on his way. Are you in much pain?”

“No, not right now.” She helps me from the stretcher to the reclining chair and covers me in blankets. My body feels like it’s in a wetsuit–each movement is weighted. But after the transition I become keenly aware of a throbbing in my ear that soon spreads to my whole head and down to my neck. I need something for the pain, like now. And I’m not a wimp. I’ve been through childbirth twice, for christ sakes. But the nurse is gone, and there’s no call button that I can see. I can’t yell, lest the throbbing increase. I can’t wave–my arms are lead. I wish Dave were here. I close my eyes and will him to come.

A nice nurse comes by with juice and crackers. When she sees I can’t open the plastic wrappers by myself she tears them open for me and sets them on a paper plate. I ask her about pain meds, but it’s not her job, she says–she’ll send over the other nurse. Time ticks by very slowly. Still no nurse with pain meds, still no Dave. And then (10 minutes later? An hour? I have no concept of time) he comes breezing in, sweaty from running up the hills to the hospital with his laptop bag, and I’ve never been so glad to see him. As soon as he shows up so does the other nurse, who sends him to the pharmacy for my prescriptions, and gets me a pill in the meantime. With nearly nothing in my stomach it kicks in fast.

Discharge is the only thing in this hospital that happens quickly. As soon as Dave has my prescriptions and I can walk without dizziness, they send us on our way. A nurse wheels me out to the entrance while Dave fetches the car. While I’m waiting, the most miraculous thing happens–a semi-truck drives by, vibrating the street as it bounces along. I feel the vibration in my right ear–the ear that was just operated on. Suddenly I realize I haven’t felt vibration in that ear for so long that I begin to weep. I never thought I would be so glad to hear a goddamn semi-truck.

I won’t know if the surgery truly worked for some time–there’s a packing in my ear that won’t be removed for a week. After that, they say it will take up to three months for hearing to improve. But as much as yesterday sucked, I’d do it all over again just for the hope of having my hearing back. If it turns out it does work, I will do the surgery all over again in my left ear.

For the next few days, I’ll be happily on the couch with this guy, who won’t leave my side.

I’ve got some final editing to do on my book, and I’m happy to have some down time to do it. Thank you all for your well wishes and kind words. It means more to me than you know! I hope I’ll have some good news to share with you soon. xoxo