A stitch in time

So, I got my stitches out. It was time. Some of them were loosening and starting to poke out. I recently lost my GP due to some weirdness with him and the DEA. He closed his office a couple weeks ago. Bad timing. I had to go to the sad bad depressing community health center....which I'm sure serves an important function to a lot of people, but makes me choke up and miss my amazing, warm, and sweet GP every time I go there. Plus the nurse feels the need to lecture me about being overweight whenever I go there. Look, nurse. I'm sorry I haven't lost that thirty pounds since I was here a week ago. I've given birth to four kids. I know I'm packing a little extra. Fuck off.

Ahem. Back to the stitches. This is how they looked before we started. Not bad. My surgeon did a lovely blanket stitch.

 

 

 

 Here's a pile of what used to hold my head together. Pretty flimsy looking, once you see it out there.

Once the stitches were out, we could see that the bottom half of the incision was getting pretty infected. The lymph nodes on the back of my neck were getting swollen and hard too. I'm starting Keflex to try to get on top of the infection. My incisions always get infected, and it's a total bummer.

They put some steri-strips on the infected half. Probably because I have "I'M A SCAB PICKER" written all over me. Which, ashamedly, is true. I am trying to keep my grubby paws off of it though, since it leads directly to my brain. 

I sure wish I could see what the dura patch is looking like. I wonder how the healing is going in there. At least it's out of the danger of my sharp curious fingernails.

A girl so quick, she's even fast...asleep.

I can't stop sleeping. I'm so tired. I've been averaging about 12-14 hours a night since surgery, plus a nap or two. So maybe 17 out of every 24 hours, I'm asleep.

 Shhhhhh....

Those who wake me up before I'm ready are greeted by a really cheerful Katie.

This recovery is hard work. Yesterday we had a birthday party here for Levi. It was so much fun, though I was exhausted after...just from the work of watching the party! My mom did a fabulous job throwing it for him, since she knew I was in no shape to do it. I'll post some pictures tomorrow. Ya'll aren't gonna believe how great this shindig was. I'd post the pictures now, but uh...I'm kind of falling asleep at the keyboard. Need. More. Sleeping.

Outside and around the corner

Last night I had what maybe was the worst headache of my life. I could barely stand up, I was doubled over with my eyes closed from the pain of it, holding on to the wall of my hallway to go to the bathroom and pee. I felt like I either was having a brain hemorrhage, or was doing some major internal healing. Either way, I just wanted to go back to bed. I downed some pain medicine and shook in bed from the pain, waiting to go to sleep or die or anything. I fell asleep, and slept for 14 hours straight. When I woke up, I felt better. So, I'm gonna go with the whole, "there was some major healing going on in there" hypothesis.

Today was a beautiful day. 78 degrees in late October, sunny, gorgeous leaves blowing everywhere. But it was a special day for another reason too. Today is my baby's 8th birthday. 

I love this child more than anything in the world (except for my other child, of course). I wasn't there today to make special muffins and bring them to his class like I always do. I wasn't there when they sang the "Happy Birthday Cha-Cha-Cha" song to him as a class. I didn't get to see him wear the ridiculous puffy painted HAPPY BIRTHDAY shirt that every birthday kid gets the honor of wearing in class all day. That made me really sad. But Nate went instead, and Levi felt loved and happy. And 8 years old! My goodness, sweetie.

And because it was his birthday and a gorgeous day, and because I'd slept for 14 hours and gotten rid of the headache from hell, I suggested that we all take a tiny walk together. I think everyone was floored that I was up to that. To be honest, I wasn't sure I was up for it. But being out in the sun felt amazing. Like, "Holy shit! There's a whole world outside of my bedroom that I forgot even existed!"

I was so excited, I said we should walk to the playground. (Don't be too impressed, it's maybe 500 feet away.) We crunched the leaves when we walked.

 

 We chatted. I felt a little normal. Sore and wobbly and full of narcotics, but kind of normal. 

 

I watched the kids run around happy and hopped up on sugary birthday muffins. I leaned against Nate, cause my head hurt. I felt like I probably should go back home to bed. But I wanted to stay in the sun and watch my rapscallions do their thang...at least for a couple minutes.

I'm really glad my headache wasn't me dying last night. What would I do without these guys?

After this little 20 minute jaunt, I promptly went home and slept again. I think it will be a long time before I can function like a real person. But baby steps.

Surgery and the days after

We woke up in the hotel that morning totally on time and excited already running late and anxious. I jumped in the shower to do my second Hibi-cleanse delousing. By the time I was done, I was so sterile in oh so many places, I probably could have done my surgery myself. Nate grabbed a cup of coffee and something to eat while I pouted in the elevator, wanting to snatch the coffee away from him, guzzle it, and drive home instead of to the hospital. But I sucked it up, and dragged my thirsty, hungry, decaffeinated and sterile ass into the car. We hauled it to the hospital, watching the clock tick by as we fought about which streets to take, as if we actually know anything about Columbus morning traffic.

If anyone would be late for their own BRAIN SURGERY, it would be me.

Luckily, everyone at OSU Medical Center is so damn chipper, they didn't seem to mind a bit that I was tardy. They were welcoming and seemed so happy to see me! Good morning, Katie! Let's cut that head open!

They got me checked in and up into a room. I changed into a beautiful grey and white gown and slipper socks that curiously had grippies on both the tops and the bottoms. Nate laid down next to me, and we decided we needed some music to set the mood. I put on the "Bubblegum Oldies" channel and we just snuggled next to each other, listening to the likes of "My Girl", "Great Balls of Fire" and "Runaround Sue." We were happy and lovey and we wiggled and danced on the gurney a little. I felt a bit like we were going to a party.

 Reality pulled the plug on our happy snuggle party pretty damn fast though. They took me down to meet with anesthesia, and talk with my surgeon, and Nate had to go to a waiting room. An IV was started, a million questions were asked. I tried to be very funny and witty because I really wanted them to like me, so they'd save my life. (That's obviously something to be discussed at my next therapy session.) I think it worked though, cause they all laughed a lot. And I'm still alive!

Dr. Prevedello, my surgeon, marked the spot where the incision was going to start, and initialed my neck. That made me laugh, that his initials were there, right under my old incision.

Soon, I was given a goofy surgical hat and Nate was allowed to come back to say goodbye. We hugged and laughed and joked a lot. I took a bunch of pictures until they told me to put the damn iPhone away. I kissed Nate and as they wheeled me away, I reminded him not to get remarried too soon if I die (because that's tacky).

When I got to the O.R, I suddenly remembered how crushingly lonely it is going for major surgery. You're surrounded with people, but you could never feel more alone. Nobody can do it for you, nobody can trade places with you. Nobody is going to die for you if things go wrong, and nobody you love will be holding your hand if you do die during surgery. Those are overwhelming thoughts, and it's easy to get lost in the isolation and fear in that moment. A very sweet neurologist came over to me and started rubbing my hand. She explained that she'd be monitoring all of my peripheral nerves with what looked like a chain-link of wires. She told me Dr. Prevedello is the very best, and the only person she'd ever let operate on her, or her children. She asked me if I had any questions. "I'm scared," I whispered to her. "I know," she whispered back, "but I'm going to hold your hand until you're asleep." I tried to say something else, but I remember it came out slurred and garbled, and then I was out.

When I woke up in recovery, I was crying hysterically. I felt like I'd been beat in the back of the head and neck with a sledgehammer. They asked me to open my eyes, but I wouldn't, I was too scared. I threw up several times. They doubled up my anti-nausea med (Zofran) but I vomited many more times anyway. I always throw up after surgery, always. They told me they were going to take me for a CT scan to check for a CSF leak. "NO!!!!" I yelled, but they put me on a board and took me down anyway. It was agony, the rolling of my body left and right, wedging a board under my neck and back, positioning me, tucking me back into my stretcher bed, all the while with me heaving and crying. I wondered where Nate was, I wanted a morphine pump, I wondered what the room looked like, but still refused to open my eyes and see what was going on. I tried to tell them that Dilaudid makes me puke, but I don't think I was expressing it right, because whenever I mumbled about Dilaudid, they'd give me more, and I'd throw up again.

I was reunited with Nate a few hours later, once I got to my hospital room, but I don't really remember it. He was just suddenly there one minute.  I sensed I was in a different room, though I was still refusing to open my eyes. The pain was so blinding in my head, I just couldn't stand the thought of opening them and seeing light and people and bustling. I stayed laying flat on my incision, trying to say things, but not managing much more than a word or two. When I had to throw up, I'd yell, "PUKE!" and Nate would come running with a bin and try to get the bed upright in time for me to make it into the bin. Usually about half went into the bin, and half down my gown. The pain in my head when I'd throw up was like nothing I'd ever felt before....it was searing and ripping. I felt like I was tearing open my internal dura patch. I wondered if I was raising my intercranial pressure too high from vomiting. I became convinced that it was dangerous for me to keep vomiting, so I started refusing my pain meds. This was an enormous mistake. A few hours later, I was screaming for the nurse to kill me. She was so sweet to me, she said, "No, honey...I'm not gonna kill you...tell me about your babies. How old are your kids?" and I yelled, "Fuck you, I don't want to talk about that! Kill me!" On a pain scale of 1-10, I told her my pain was a 20. And it really was. I'm not being melodramatic at all. It was godawful. To validate that feeling, I offer you this: several of the nurses on this floor (which was the ICU step-down unit, for critical post-op and trauma patients) told me that their Chiari decompression patients are in the most pain of anyone else they see. They said it's just an excruciating surgery to recover from, particularly in the first few days.

Finally, after all the barfing and all the agony, they figured out that the Zofran just didn't work for me, and they started giving me Phenergan instead, along with a dose of Dilaudid, Valium, and Toradol. I got relief for the first time, about 24 hours after surgery. And as long as we stayed diligently on top of the meds, I was ok. In horrid pain, yes. But no longer hysterical and begging someone to kill me. I stopped throwing up so much and started feeling like I was recovering a little.

I got out of the bed and stood up, which felt like an enormous accomplishment. My kids came to visit me, and even though I slept through most of their visit, seeing their little blonde heads bob around the room lifted my spirits immensely. The next day, at 48 hours after surgery, I walked around the wing a few times. While I was walking, I saw the nurse that I had begged to kill me, and she was so so so happy to see me up, she ran over and hugged me. Hugged my disgusting greasy puke-splattered self. At 72 hours post-op, I took a shower. My amazing husband got in with me and washed my hair and body. THAT is true love, my friends. And a few hours later, they drugged me up with a huge dose of opiates, poured me in the car for the two hour ride home, and sent me back to recover in my own bed. God I am glad to be here. And by "here" I mean both in my own bed, and not dead. :D

And the view from my room is much nicer, too.

I am still in a lot of pain, but I think doing this operation now was definitely the right choice. My doctor talked to me after the surgery, and told me it was a darn good thing we operated when we did. He said when they opened the dura (that's the membrane covering the brain), they could see that my cerebellar tonsils and brain stem were so compressed that they were turning white. They were ischemic and were not getting blood flow and oxygen, and parts of the tissue were necrotic. He said there was evidence of stroke activity. Basically, it was a very serious Chiari causing a lot of problems in my brain. I'm glad I went ahead with this surgery. I asked what would have happened if we hadn't operated. He shook his head and said, "Would not have been a good outcome."

He did a beautiful job closing my incision. I asked him not to use dissolvable sutures...since that is what my previous surgeon did, and I struggled with infections and suture rejection for 6 months. He chose to use traditional sutures, that will be removed. Here is a picture:

I think it's looking pretty good so far.

The day before.

I spent the week swinging widely between being calmly zen, and feeling a strong sense of impending death. Today was no exception.

My therapist suggested that I may need to work some of this baggage out before surgery, but I'm kind of feeling like being anxious goes with the territory here. I saw her a few days ago, and she did some guided imagery with me. It was all going well. I sat with my eyes closed as she led me down a wooden staircase, to a vast expanse of beach....beautiful and nearly deserted. Perfect! I've been to just such a beach, at Bald Head Island. That is a great happy zen place to go! She started guiding me through the warm sand. It was going swimmingly, and I thought that maybe this guided imagery shit was just the ticket to quell my nerves the morning of surgery. But suddenly the train went off the rail. I spent the next five minutes deciding what I should wear to the beach, as my therapist continued to prattle along about the feel of the sand. ("Crap! Red swimsuit or black? Decide, Katie! Decide! The red one gives great cleavage, but it pinches a bit. Maybe wear the black one instead?!? Wait, what am I supposed to be doing right now? Feeling the sand with my fingers?!") Once I'd mentally picked a swimsuit, I decided I needed a cover-up - spurred by her line that I "could feel the hot sun on my shoulders." Then, I was supposed to be dipping my toes in the surf, but I had to mentally stop and apply sunscreen. Skin care is just super important to me. By the time I was officially ready to go to the beach, we were counting down to come back to the cramped little office in Kent, Ohio. Dammit.

I'm really just too neurotic for guided anything.

So this week, I tried to find my calm in other ways. Some people shop when they are stressed out (I'm looking at you, Mom). Others down a bottle of wine and watch a Lifetime movie. (Not naming any names with that one.) Me? When faced with serious stress, I compulsively grasp at "healthy living" straws. For the past few days, I've been pretty singularly focused on Doing All The Healthy Things. Food. Sleep. Exercise. Anything. Just don't die, Katie. Today I wanted to go full out. Eat only raw greens. Appreciate the little things. Finally get around to trying chia seeds, maybe?

I watched the sunrise with the kids...which was really quite beautiful.

 

I took a short walk, I saw a rainbow and the fall foliage.

I ate all the superfoods I found on the superfood list. I took my supplements faithfully all week, and kept my prescription meds to a minimum. I only drank the water with the electrolytes. I did some yoga stretches.

 

 I got acupuncture and a little massage work from my amazing and talented friend Eric.

Then, all packed and ready, I got in the car with Nate and headed to Columbus. By the time we got there, two hours later then we expected, I was so effing hungry. I'd had to pee for an hour and I was in no mood for a bowl of raw kale, an hour of taped guided imagery, and an early bedtime. I turned to Nate and said "Fuck meditation and superfoods. I'm gonna take some Vicodin, and let's go out and get some cheeseburgers!" Luckily, I married a man who is always down with some late night burgers. We found this place called Graffiti Burgers. You can draw on paper bags and they'll hang them on the wall for you.

We made a little art while we waited.

 

Then, having eaten mostly kale and berries all day, I attacked my bacon double cheeseburger with angry fury. Hey, I need my iron. I'm probably gonna bleed a lot tomorrow.

Back at the hotel we checked into, I was delighted to find a hot tub. People who know me best know there is little in this world that pleases me more than cheeseburgers and hot tubs. My friend Ryan refers to them as "hot toilets," (due to the disgusting nature of our fellow humans), and I couldn't get this phrase out of my head as I lowered myself into it. I'm pretty sure my surgeon wouldn't approve of me sitting in the 104 degree hot toilet 12 hours before surgery. Ah well. It was worth it.

Nate took this picture. He likes it when I have sad clown mascara.

At my pre-op appointment, they had given me a bottle of surgical scrub Hibicleanse to shower with tonight. I felt it was going to cancel out the hot toilet quite nicely. I deloused myself with the nasty harsh soap and I'm pretty sure I've never been more sterile, and my skin has never been dryer and more uncomfortable in my life! Good sign, I think!

 

So, my surgery is at 10:15, and we have to be there at 8:00 a.m. Nate will be updating both the blog and Facebook tomorrow. Wish me luck, dudes!  xoxo

Nip/tuck: Chiari surgery explained

So, I'm gonna do the best I can explaining this, keep in mind I'm not a neurosurgeon, I just play one on the internet. I've had a lot of help from my friend Dr. Google, and he really deserves a lot of the credit here. Not only is he there for me at all hours, but he never blows off my pain or symptoms. In fact, he's pretty sure I'm either:

a) for sure dying
or
b) maybe dying, but definitely having legit pain.

Thanks, doc. You really know how to validate a chronic pain patient.


To the subject at hand...Chiari surgery. This surgery, which is also known as "posterior fossa decompression," is the only real way to try to "fix" a patient with Chiari. If you read my last post, you know that the basic problem that we Chiarians have is too much brain in a too small skull, resulting in the herniation of the bottom of the brain. Physics, man. What can be done to fix this? Turns out, not a whole lot. You can't shove the herniation back into the skull...there's no room for it in there, which is why it's smushed out into the spinal column in the first place. The only logical option is to try to expand the space that the brain is herniated into. Some surgeons will also cut off or cauterize the herniated part of the brain. Thank god neither of my surgeons have done that. Even though I've been assured that "you don't really NEED that part of your brain," I don't find that a very comforting line. Don't scientists only know about like 10% of the brain? How do they know I don't need that?! It's a moot point though, as my last surgeon did not cut off the herniation, and neither will my new surgeon. Whew.

Now, Chiari surgeries are a bit like jazz. You don't really know how they're going to go. They're unpredictable! They vary a lot by who is performing them, and what mood strikes them once they are in your head. But, step-by-step, they go a little something like this:

1. Wheel the patient down the hall into the O.R. Make sure she's conscious just long enough to see the enormous weird bed of foam she's going to lay face-down in, and the halo they will screw into her skull, to stabilize her head. Ask patient why she's crying. Is she nervous or something? Why?! It's going to be fine! There's NOTHING TO BE NERVOUS ABOUT. Oh, that? That's just the table of drills and screws for your head, don't worry about that. Look away.

2. Ask if her if she wants to climb on up in the weird foam BEFORE being knocked out, or be rolled (in a most unattractive fashion, I'm sure) after she's unconscious.

3. Knock patient out. Roll her naked white ass into the foam. Screw her head into the halo. (You didn't think I was gonna opt to do that awake, did you?) Shave the back of her head. Make a slit up the back of her neck. Be sure to cut her neck muscles too, for extra recovery fun.

4. Chip and saw away the parts of the skull that are compressing the brain. Perform laminectomy, removing outer area of the first (and sometimes second) vertebrae. As far as I know, they toss these pieces in the trash like old chicken bones. They will not be replaced with anything. You're just gonna have a dented sadness where they once were.

**Now, my first surgeon decided to stop after step 4, and sew me up. This proved to be a mistake - but that's a topic for another blog post.**

5. Cut a slit in the dura, and perform a duraplasty. The dura, in case you're not acquainted with this part of your anatomy, is a tough membrane covering the brain and spinal cord. Where the straight slit is cut, they sew a bigger, round patch on the slit. This essentially "lets out the seam" of the dura, so it isnt compressing the brain herniation as much. Think of it this way: you ate too many damn donuts again. Your pants don't fit. Your gut is bulging against the waistband, creating a pressure that is most uncomfortable. So, you cut a slit in the waist of your pants, and sew a bigger patch on that slit - and voila! You've made the waistband bigger, and relieved the pressure. This is the same basic premise that is happening during a duraplasty. The dura patch's composition material varies by the surgeon's preference. Some of them use a bovine patch (Moo!) and some will harvest some of your own scalp for the patch. My surgeon is planning to use Alloderm, which is made from cadaver. That's code for a piece of a dead person. It has already been rendered acellular, by some process I can't begin to understand. But basically, it's super clean cadaver tissue with no more cells leftover from the person it used to belong to. That whole aspect makes me feel kinda hinky, and I try not to think about it too much.

This is a little illustration of a duraplasty. I want you guys to know that I had to do a Google Images search for this picture, and it was really gnarly. I totally took one for the team looking for this friendly, sterile drawing. Google Images is NEVER your friend, unlike Dr. Google.

6. Put in titanium plate, to keep contents of brain in, and hopefully prevent neck muscles from adhering painfully to the dura. (<--- like the muscles did after my last surgery, leaving me in chronic, daily, awful neck pain).

7. Sew or staple or glue up patient. Surgical closure will vary by surgeon. My first surgeon used sutures, but that didn't go so well. I'm hoping for something a little less infected and weeping this time. Crossing my fingers for some glue, but the staple gun would do me just fine too.

8. Take patient to recovery room. Wake her up. Be ready for her to blow chunks! Prepare for her to scream, because throwing up 30 minutes after someone just cut up your brain and sewed up your neck hurts hella bad. (Side note: it's also really interesting to vomit when you can't sit up, or turn your head. Imagine where that vomit goes. Now imagine you have no hope of taking a shower for at least a few days. This is where it's key to have a support person who really, REALLY loves you. There's going to be puke, there's going to be crying, there's going to be a lot of gross stuff. It's messy. It's brain surgery. It hurts.)

9. Move patient to neuro ICU or regular hospital room. Ply her with opiates and bedpans. Release patient after 3 days or so, if there's no fever and she's made a #2 without her brain falling out her incision.

I think that's it in a nutshell! Needless to say, I am SUPER EXCITED to go do this again a mere 17 months after the first attempt. LOL. The first surgery was not successful, most probably due to my surgeon not going through the dura. I did get this bad-ass scar though:

So...the million dollar question: why on earth would anyone subject themselves to this kind of surgery again, with no guarantee of being cured?

The simplest explanation is: I want my life back. I NEED it back. I can function most days, with the aid of prescription pills, lots of rest, modifying my activities, and making people I love do the stuff that I can't. But that fails. I hate it all. And some days, there is no functioning. There is no getting out of bed. The pain and pressure in my head renders me useless and near tears all day. Awful.

I know I will always technically have Chiari, and I will always have to be careful of my head. I know I will be very lucky if this is the last invasive treatment I'll ever have for it. The official goal of this surgery is to stop the progression of neurological decline - but I know several people who have experienced a nearly total resolution of pain and symptoms. And call me greedy, but I want that so bad. It's what drove me to the first surgery. It's something I'm not ready to let go of yet.

 I know that the road to recovery will be full of pain and more pain. I'm gonna call in all my favors from all my friends and family, out of necessity. I'm gonna cause my family stress and worry. I'm going to drive us further into financial despair. But I have to try again. I have to roll the dice. I want to badly to be the girl I was just a few years back. I can almost taste it. I'm willing to go through another surgery, and I'm (grudgingly, sheepishly) willing to ask my friends and family to support me through it again. I'm so so so tired of being in pain, of the head pressure, of the constant stress of Chiari, hanging over me like a black cloud of awful. I'm bored to death with "taking it easy." Taking it easy for one day is awesome. Taking it easy forever is shitty and not living life.

I can't deal with the constant march to neurology offices and ERs and MRI tubes. I'm just so over all of this.

I'll be blogging more this week as I head to Columbus for surgery. Stay tuned, loyal readers...all one or two of you!