This is Spinal...Damage?

Sometimes, I wish I weren’t right all the time. At least, I wish I weren’t right all the time about my own body. Wait, no; Judy Blume taught me to trust my own instincts about my (female) self. Yay periods! No, that’s still not right.

Okay, mostly I wish I weren’t right about predicting when something ridiculous is wrong with me, and I that I may need more surgery. Or, that I’m randomly about to become the weirdest case of “sick” or “falling apart” in the history of some doctor’s caseload.

When Collin was a baby, I had to have my tonsils out in an emergency surgery, for example, after having an abscess on them drained in the emergency room, because it had become so swollen it was compromising my airway. By the morning, it had re-filled with so much fluid, that I had to be wheeled back to surgery within an hour of my follow-up check because my entire airway was blocked. When it comes to finding ways to be messed up, I don’t screw around; I go hard.

Since I started this ever-so-epic journey of Chiari, another thing I was right about:

*Insert Digression*

Dear Doctor-First-Neurologist-Who-Told-Me-I-Was-Fine,

 I wasn’t.

Sincerely,

Patient Who Told You So

 *End Digression*

Anyway, since I got sick, even before I knew it, I have also been complaining about very specific neck pain. I can point at two spots, one worse than the other, right down to the centimeter, that bother me. And, as it turns out, I have been right all along about those things too.

This is how these complaints have traditionally been received….

“Rachel, Chiari comes with neck pain. It’ll feel better once you are decompressed,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons and fully believing that it’s true.

But my neck pain didn’t, and hasn’t, improved. And, post-operatively:

“Rachel, you’ve had Chiari surgery. Your neck muscles were opened like a curtain. Twice. You’ll have some post-operative pain for a while. Give it some time. Plus, your neck will always be a bit weak,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons, but at the one-year point of surgery #2, a little suspicious. Mostly because she can’t even wash her hair without crying.

So, I talked to my pain management doctor. He’s the very bestest doctor in the whole world, so I really trust him, and I know that he listens to me. Hell, even if he’s not, he’s the best faker in the world. He’s really good at making me feel like he’s listening. I imagine that in his outside life, he’s used up all his listening skills on his exhausting patients, like the ones I can hear through the walls while I wait, begging for Oxycodone because they have indescribable pain in a different spot than last time, and his wife wants to murder him because he can’t remember to bring home the damn bagels that she just called him about on the ride home.

Anyway, I’m not on any pain medication right now, so my pain is, not currently what you’d callmanaged.” It’s out there in the open, screaming to be heard. It’s basically having its own little pain pride parade every day. But, he’s still trying like hell to help. He’s concerned. I’m concerned. Bryon’s concerned. I think the mailman, who is forced to witness my walk of (non)-shame to the box in my pajamas every day, is also concerned.

Don’t get me wrong, I didn’t expect no pain for the rest of my life (not that I didn’t hope for that scenario – don’t all Chiari patients long to be a success story that does something amazing like running a marathon again, or being in a Wheaties commercial?); but, I did hope to be able to sit upright for larger portions of the day.

I explained for the billionth time, to him, the few spots on my neck that were agonizing, and stressed that I’ve said this at every appointment to every doctor. And, I told him that there are other things that are freaking me the fuck out, now too. My arms are going to sleep, sometimes for up to 18-24 hours at a time. I get dizzy when I look up, sometimes to the point of falling over. I can’t see if I look to the left or right too long. My legs are week, especially my left one. My left hip hurts so much sometimes that my Tiny Tim impression is far too true-to-life.

He’s known that my neck has hurt all along, and he’s done plenty to try to ameliorate it, from physical therapy, to suggesting a medical pain implant device, as a last resort. But he did a full exam and was pretty shocked at the extent of the new weakness. So, he sent me for a battery of tests and images that made me feel like someone was finally taking it a little more seriously than, “this comes with Chiari.”

The most “fun” test was the EMG, because everyone loves to be stabbed with tiny needles to see how their nerves are functioning. Spoiler alert: my nerves seem to be functioning okay. But, this is good news, because we were temporarily terrified of a potential MS diagnosis. Phew.

My surgeon likes to say:

“your spine looks great! I wish I had this spine!”

This assessment has perpetually annoyed the fuck out of me. No matter what specific question I had for him, his answer was always that my spine was great. Great. Fantastic. Great. No issues. Great.

Hmm…

That seems so weird for someone who has had neck issues since day one. It was, in fact, the first thing that sent me to the doctor, aside from the headache. My neck pain spread so far down my shoulder and neck that my whole arm became useless. I couldn’t lift my work bag. Thanks to fantastic military medicine, I was prescribed Motrin, and I was miraculously healed.

My surgeon is a fantastic surgeon, but he has a reputation for not really “cooking stats,” but for keeping his stats the way he wants them. This means that if you go see him for Problem A, he won’t “let” problem B pop up on your case, because he doesn’t want to mess up his high success rate on his surgical stats. So, no matter what you come up with on your imaging, he’ll tell you that you look great.

I’m a Chiari patient. He fixed my Chiari problem. I’m not a spinal patient. Not even if that Chiari caused the spinal damage (which it obviously did). Chiari fixed. Job done.

This can be a problem in sick-person world, because finding a spinal surgeon to take on someone else’s work is, well, challenging. Duh, they don’t want their hands dirty with someone else’s trash stats either! Meanwhile, patients suffer.

And, in case you hadn’t guessed, you don’t want the Jiffy Lube of spinal surgeons messing around in there, especially at the C-spine level. Your C-Spine is the level between your neck and shoulders. A tiny slip and you are paralyzed from there below, including breathing. Hooray! Jiffy Lube surgeon means the potential for diapers and a ventilator forever! At least I won’t be able to say my neck hurts, right? Not funny? No sad clown?

So, drumroll….

I get all of my imaging results back and what do you know? My C-Spine is rather fucked up. In fact, I’d like to take a moment to congratulate C3 and C4 right now for being the only two vertebrae, currently, holding down the fort. Great job, guys. A round of applause.

C-1, which is the vertebrae that my first surgeon shaved to make room for my brain, whelp, that one is deteriorating pretty badly. C5-7 are also degenerating, and the discs at most of these joints are bulging, especially badly at C7.

The insane part is that these are the exact spots that I point to, every time for the doctor. Every. Fucking. God. Damn. Time. And, I always say, “This spot is the worst,” at C1. Always. At C1, I always demonstrate how if I hold my head a little differently, I can relieve some of the pressure, but it doesn’t help for long. Hmmm, wonder why that is! Because that’s where my amazing (I’ve decided to compliment it from now on, in hopes that it will be nicer to me) brain used to be sitting!

Grrrrr.

Did you know, that Chiari is a progressive condition? That the longer your brain, which is fucking heavy, sits outside your skull, and rests on your SPINE, where it’s not supposed to sit, it does damage? It’s a damage domino. I was 37 when I was “fixed” the first time, which failed; 38 when I was fixed the second time. So, I was 38 when the weight of my brain finally got lifted off my spine. For 38 years the weight of my brain rested on my spine. No shit there’s a bunch of damage there.

So, what to do?

Well, that’s the million-dollar question. I have no idea. I’m scared right now. I have a bunch of information that I have no way to fully figure out, at the moment. I’m relatively certain my current surgeon will say what he always says, but who knows? With a report in hand that says my spine isn’t great, he may not be able to say that. Of course, doctors like him like to say things like, “this kind of thing is normal,” especially for women my age. Since this damage is progressive from reports before, I know it’s most certainly not normal, my man.

Um no.

Most women my age can function without a C-Collar. Just sayin’, doc. Not going to get away with that one. But, I don’t want to rush into spinal surgery, either. Fusion is the most common spinal surgery, but at the C-level it’s a big damn deal.

And, it’s relatively rare at C-1. There are significant risks of fusion at C-1, because C-1 holds your head ON your neck, and makes it turn. It means that there’s an almost guaranteed reduction in mobility and range of motion, usually up to, or at least, 50%. Hooray! Because of this, it’s usually only done when required; for example, when your neck is broken, or you are literally decapitated internally. It’s also done when, wait for it, your neck bone (yeah, like mine) deteriorates. Booyah!

Ding! Ding! Ding! What does she win!? The high probability that she’ll soon be filled with neck hardware, new scars, another shaved head, and the increased frequency of surprising her from both behind and all sides. 

There’s a pain implant device, but is that just a Band-Aid until my neck gets so bad that I can’t move at all? Then what? What if there’s nothing left to fuse at that point? Do I go back on pain meds and hope for the best? Oy!

Oh, and by the way, my hip hurt because I had broken it, and never realized it. Yeah. For real. I broke my damn hip! Who the hell does that! Apparently me.

Okay, I’m being dramatic.

But, it’s mostly true. Apparently, I broke a big ol’ chip of bone off my hip and there it is on the X-ray, having had its maiden voyage, and then rejoined its pals on the old SS. Hip Bone! I wonder where that chip was trying to get to?

Now, I don’t feel like such a damn baby for whining about it. The report says that I may have also a labral tear, but meh. I think the broken hip sounds more impressive. I think I’ll adopt a permanent limp from now on.

Bryon says he thinks I have osteoporosis because since he’s known me I’ve broken too many bones, and my spine is falling apart way too quickly for anyone’s taste. And, he’s all braggy about having never broken any bones. I think that instead of worrying about me having osteoporosis, he should worry about which of his bones I’m planning to break for making fun of my pitiful weakness. Except I’d probably break something trying to do that, so that’s a terrible idea! And who gets to almost forty without breaking a single bone? Didn’t he play as a child? Come on! I was a dork, and even I broke two bones as a kid! Lame ones, but still.

We have about a jillion doctors’ appointments coming up to talk over options and what to do in the next few weeks, and I’m hoping for more answers, but I know this process. It’ll leave us with more questions and more answers than before. I know we won’t know anything more. I know that it will be months before I know what’s happening. I have names and numbers of more surgeons for second and third opinions, if my surgeon decides to be a butthead; but they are all, of course, out of network. Ugh. But, it’s the beginning of the process.

So, away we go again! Wish us luck.

I leave you with the image of this insanity, if only because of how happy my boy and I look. Bryon noticed that every time he tickled Collin, I laughed too. Collin’s laugh always gets me. Every. Single. Time.

 

I may not be able to sit up for more than a few minutes at a time, or get dressed very often, or comb my hair, or put on my makeup, but I can let my boy lay next to me and listen to him laugh.

So, ignore the up-the-nose-shot, and how ugly I look, and enjoy mommy-son joy.

My Crappy Haircut

My surgeon shaved a significantly larger portion of my hair this time, than my surgeon shaved of my head last time. Certainly, this is not my call to make; I’m not in charge of how much to shave. Nor, am I in a position to question why such a call was made. However, I am in a position to say that it makes me unhappy. I like having hair. It’s why I chose to have it.

Sick people don’t like complaining. We even get tired of hearing ourselves! Outside of complaining for a purpose, I try not to do it too much. For example, I complain thousands of times a day about how much my head or neck hurts, about the quality of my pain, the type of it, and the location; however, I do this to help log my pain for the specific purpose of medication management.

But, when I complain about something else, something specific like my hair being shaved, it’s probably because I’m pretty upset about it.  My doctor was pretty bummed when I complained to him about how much hair he’d shaved. See, we’d had a little heart-to-heart about how much he was planning to shave. I thought we were on the same page. I know I’m not supposed to care as much about my hair as I do about my brain and my recovery. But, I do. When I told him I was a little upset about my hair, he looked at me as if I was about to sue him for malpractice. Apparently, my hair comment trumped the superfluous thankfulness. Frankly, I think his surgeon’s ego is a little sensitive.

Gross! Blood! Guts! Spinal Fluid! Ick! But, worst of all, so much hair is gone! This is the day I woke up. I had to leave the bandage on for three days! It kept peeling up, because I had to ice it so often, and the edges kept getting wet. To counter-act this problem, the nurses would slap more tape right on top of the old bandage. When it was time to take the bandage off, this meant there were several layers of thick, new tape to peel off. The resident just yanked it right off, fully attached to the hair that  was  there. It was...unpleasant.

Gross! Blood! Guts! Spinal Fluid! Ick! But, worst of all, so much hair is gone! This is the day I woke up. I had to leave the bandage on for three days! It kept peeling up, because I had to ice it so often, and the edges kept getting wet. To counter-act this problem, the nurses would slap more tape right on top of the old bandage. When it was time to take the bandage off, this meant there were several layers of thick, new tape to peel off. The resident just yanked it right off, fully attached to the hair that was there. It was...unpleasant.

But, his reaction is not so annoying. What’s annoying is the common reaction of, “it’s just hair,” or “it’ll grow back.” Those stupid platitudes about what, I understand, is just hair. I know. I know. I KNOW. I realize that there are countless other things that I could be worried about right now, and I’m lucky to be freaking out about my hair. I could be hooked up to life support, with a ridiculous case of meningitis, or an infection. Or worse.

There’s this thing that people do when sick people complain: they offer platitudes to try to ease their own suffering, or discomfort at hearing a loved one (or even stranger) complain. The problem is, it doesn’t ease the sick person’s suffering. It eases the suffering of the person offering the platitude. Think about it: when you hear a sick person complain, you are uncomfortable because you don’t like knowing someone (you care about) feels icky. Furthermore, you know that you can’t really do anything to make it better, but, you want to do something. Knowing you can’t fix it makes you even more uncomfortable. To ease your discomfort, not theirs, you offer some empty platitude. This does nothing for the sick person, but superficially, you think “phew, I did something,” and you can think “at least I said something positive!” In your mind, you think that maybe this will make them think positively. Ugh.

Here’s the thing though: it’s my hair. I’m entitled to feel crummy about it. I’m entitled to feel like crap about walking around for a couple of years, looking different than I want to look, different than I’ve looked for over ten years. Imagine waking up tomorrow, different, in a way you have no control over. Now, imagine someone telling you to be grateful about it, because it will go back to “normal,” eventually.

There, all cleaned up and without a bandage. This is a pretty accurate depiction of what I'm dealing with, hair-wise.

There, all cleaned up and without a bandage. This is a pretty accurate depiction of what I'm dealing with, hair-wise.

Can we be realistic, for a second? How long do you think it takes for a shaved head to grow back to it’s previous length? I have really long hair, and now, for over a third of my head, I have no hair.

Apparently, I’m supposed to feel grateful for, and not care about my bald spot. I’m supposed to feel like it represents a successful surgery, right!? Plus, I’m supposed to be super happy, because the rest of my hair will “cover” the shaved area. Newsflash, it doesn’t entirely cover it, unless I wear my hair down, and stay completely still. This sounds completely reasonable, as I do tend to stay 100% still, 100% of the time. Furthermore, I am grateful for hair that is reduced in thickness by over a third. It looks luxurious and full. Wait, no, I’m not. Hold on, I’m sounding sad again.

Vanity aside, what’s bothering me the most is that, from the back, I’m identifiable to anyone on the street, as only one thing: a patient. If you saw a person with a shaved head, and a large scar going halfway up their head you would think one of five things:

  1.             What’s wrong with him/her
  2.             What happened to him/her
  3.             Did they have cancer
  4.             MAYBE are they contagious (if you are a germ freak!)
  5.             Oooh…isn’t s/he brave

The worst of this is that now, I’m ONE thing: I’m Chiari (if they ask). If they don’t ask, I’m just some medical “thing,” to strangers. Without this bald thing, I’m faceless and nameless to strangers, which allows me to be whoever I truly am. I’m so many things other than a patient.

An attempt at "prettying" up the bald. It's been braided so many times that the ends are frayed and disgusting. Nothing really hides that it's bald under there. And, i have to keep the incision mostly open, for now.

An attempt at "prettying" up the bald. It's been braided so many times that the ends are frayed and disgusting. Nothing really hides that it's bald under there. And, i have to keep the incision mostly open, for now.

Now, this hair thing has made me a prisoner of its causes and definition. It makes me want to wear a t-shirt with other things printed on the back. I want it to say that I’m also a writer, an artist, a mother, a student, a wife, a reader, a lover of animals, so many other things. I’d fill the shirt up with small print. I’m not just a bald head to be stared at.

It’s funny, sometimes I’m proud to show my status as Chiari Warrior, as “zipper head,”[1]; but other times, I want to be able to put my hair over my scar and be able to let it be a secret identity. By having so much hair shaved, I’ve been robbed of the ability to have that identity kept as secret as I want it to be, at least for a while.

The picture on the left is my incision from the surgery I had last year. the two on the left are my "new" incision. One is immediately after surgery, and one is about a week later. The staples come out in a week. While I've had significantly more hair shaved, it does appear cleaner.

The picture on the left is my incision from the surgery I had last year. the two on the left are my "new" incision. One is immediately after surgery, and one is about a week later. The staples come out in a week. While I've had significantly more hair shaved, it does appear cleaner.

So, tell me “it’ll grow back,” or “it’s just hair,” all you want. But, if you want to say that, I challenge you to shave all your hair tonight. Or, I challenge you to dye it all green. Do something drastic that you cannot change, that would force strangers to question who you are, or what you are, on the street. Then, be grateful about it. Be grateful that you aren’t dying, or that it’s not worse.

A failed attempt at "pretty-ing" up! Good Gawd! I can't wash my hair as much as I'd like, because of the incision, and because of the braiding, it's crazy frizzy. I look like Cousin It! 

A failed attempt at "pretty-ing" up! Good Gawd! I can't wash my hair as much as I'd like, because of the incision, and because of the braiding, it's crazy frizzy. I look like Cousin It! 

 

[1] In looking up whether or not to hyphenate “zipper head,” I learned that, apparently, that’s a super derogatory term for people of Asian descent, coined during the Korean war. Who knew? Chiarians have re-appropriated it to describe themselves, based on their scar, but now I don’t think I’ll use it anymore, especially since it’s based on the same description (zipper-like scars). We describe our own scars, and apparently GIs described running over Koreans with Jeeps leaving zipper-like marks on their heads! Yikes. It’s like claiming a racial slur and making it positive. Um. No.

When the Sun's a Black Hole

What no one tells you, when you finally get a diagnosis of a weird disorder, is that things like Chiari don’t like to play alone. “Yaaaaay!” You think to yourself, when the doctor gives you the grim news that you need brain surgery. Sure, that’s fucked up, but it means that you have hope of feeling better; and more, it means that you actually have been feeling like the shit you’ve been describing for months (or years) prior, and someone finally believes you. More, it means that the doctor believes you. He can point to it on an MRI, a tangible result. But, he neglects to tell you that the thing that you have, it’s just the beginning.

I learned this week that meds that I get to take forever, or maybe not (who the hell knows, anymore?) have made me allergic to the sun. I remember seeing a documentary once, when I was a kid, about a child whose mother had to keep her kid inside, twenty-four hours a day, shades drawn, because even a sliver of light would cause him to blister and peel, screeching in agony. Is this my future? I hope not! And, it’s likely not.

The other day, I was outside painting (working on a large sign for my boy, for Autism Awareness day—which he didn’t appreciate enough, but I’m not complaining—okay, I am), and noticed that my arms were itchy, and covered in red bumps. Since it was especially on my hands, I have enjoyed the three days since, trying to hide my hands from the public, so they don’t think I have a communicable disease, like the measles, when I do things, like complete a credit card transaction. Nothing says, “I’m not a leper,” like cramming your thumbs into the sleeves of your shirt, on an 80-degree day, and pretending it’s normal.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

I’m really fair-skinned, and I’m always the first to burn. I don’t tan, I burn. Apparently, I’m Irish? I’m not even really sure. I’m one of those American mutt-breeds, with no real link to ancestry, except that I’m 100% positive that I’m Dutch. Do the Dutch burn?

Anyway, I’m careful to use sunblock; I cover up with lots of clothing, and even wear a hat. Yet, it was so warm, I took off my paint shirt, and worked out there in just a t-shirt, working away. In almost no time, I was covered in welts, not just the telltale ache of a burn.

I look forward to wearing flattering SPF50 or higher sun protective clothing. You know the type, right? Either flowing sundresses that look like they belong on The Golden Girls (don’t get me wrong, I love the GGs), or camp shirts that make me look like a park ranger (again, not that I don’t like park rangers, I’m just not one). I’ve acquiesced to a floppy hat, but I feel like this is a bridge too far. We’re going to Universal Studios this week, to celebrate the boy’s birthday, and I was literally browsing Amazon, trying to figure out ways to accessorize an SPF potato sack shirt with a belt. Help me.

A few days later though, the meds became too much. The rash was growing, instead of receding, and I’d not been in the sun any additional time. Plus, I was feeling terrible. I kept repeating how I just couldn’t put my finger on what felt terrible, just that I felt so awful. If you’d have asked, I’d have said that even my fingernails felt icky. All I wanted to do was lie down, but even that felt yucky.

I don’t read side effect lists of medications when I start them anymore, because I’m a hypochondriac. If it says that it’s possible to become spontaneously pregnant with a whale, I’ll be sure to birth the world’s first human-whale hybrid, on the spot. So, I usually give a med a fair shake, and then if I feel iffy after a while, I check into it.

This had been over a week, so I looked at the list, and under the, “if these side effects happen, stop immediately and contact your doctor,” were rash that looks like red pinprick dots, feeling sick all over, and irrational anger. Did I not mention that the sight of my husband made me so angry that I was having trouble restraining myself from not punching him in the face? My husband, who happens to be the most perfect partner in the world, and I wanted to smack him, just for asking, “what’s wrong? Why are you so mad at me?” I don’t know! But, stop being!

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Yeah, so I’ve stopped that drug. I’m hoping that I’m allergic to the drug, and not the sun. I also hope that I'm not allergic to existing in the same house as my husband.  It would suck to be allergic to the sun. I've been off of it for almost 48 hours now, and I can already tolerate my husband's breathing much, much better, so thins are looking up.