I know, I know.

There's something you probably should know about me, and it's this: this is actually my fourth blog. I've abandoned all of its predecessors and they died a cold internet death. I swore to myself, and my two subscribing readers, that wouldn't happen with this blog... at least not while I have more Chiari story to tell. And I do! I'm just a lazy ass who hasn't updated her blog.

This whole "me being a lazy ass" trait is not exclusive to blogging, by the way. Back when I was in school, my report cards would always say: "Asset to the class. Does not complete assignments."

I think that's kind of me in a nutshell. I'm amazed I live in a house with children and a husband and a whole cleaning closet full of cleaning supplies that I USE. And that I haven't screwed all of that up yet, and made that adult life die a cold internet death too. It's really kind of impressive.

But the good (and more relevant) news is, I'm working on another post and update. I'm hoping to have it up tomorrow, which means probably this weekend.

As if.

Can I just say...it is mighty hard to go from lying around in your pajamas sleeping 18 hours a day, zonked on valium and painkillers...to wearing jeans and real people clothes, opening bills, going places, parenting, and participating in the real world again. Talk about a reality check. Can't I be an asset to the class....in bed? Asleep? In these elastic waist pants? No?

Too much.

I thought I'd go swim yesterday after being given the enthusiastic green light by my doctor, but the day slipped away (by that I mean I slept too much) and then it was kind of late for the pool. So I decided instead to drive 5 miles to the shopping center. I haven't left the house much in the last month, and it was fucking exciting to go into the Target. One thing led to another, and pretty soon I'd gone to several stores and eaten at Panera. I realized once I got a slamming headache that my "quick test run" had lasted three hours.

I went home right away, and even after taking meds, my head was still killing me. I reached up and touched my incision, and right above it, I felt it was all puffy and swollen. And also a bit squishy and bumpy, as if there was fluid mixed with bits'n'pieces of I-don't-know-what, collecting above my incision line.

All this is to say, I clearly over-did it, and now I'm all swollen in a weird spot, and my head hurts again. So, I'm not gonna get in the pool yet for awhile, cause it's pretty much germ city in pools, and I don't know what the fuck is going on with my head. It could just be swollen or it could be a small CSF leak collecting in the soft tissue. I'm gonna spend a few days taking it easy and if it doesn't go away, I'll call my doctor.

Smaller steps, I guess. At least I got some new eye shadow and a nice bowl of overpriced soup.

Check me out.

Today, I had my first check-up with Dr. Prevedello in Columbus.

It was good to talk to him sober, since all of my chats with him in the hospital were clouded by my morphine buzz, falling asleep during our conversations, and just generally being a gross druggy. He did a little imitation of me today when he saw me. He said, "Wow, you look so good! Last time I saw you, you looked like this..." and then he hunched over and made a pissy sad face. Which looked pretty accurate.

He explained more about his surgical findings. He said I had a lot of scar tissue to clean out before they could even get down to the dura. Since I have a tendency to build up a lot of scar tissue and adhesions, that didn't surprise me. This is part of why he put the titanium plate in my head this time, to stop my neck muscles from adhering to the dura again. I asked him to talk more about the whole "your herniated brain tissue was ischemic/stroke-y, and dead and awful and compressed" and he confirmed that was indeed the sitch in my head, and it looked like there was stroke activity on both sides of that area of my brain. He made this mangled bad face when he described it, to really drive home how weird and bad it was in my skull. I totally love this guy, he's so warm and real.

It's too early to tell if the surgery was successful (and by successful, I mean - freed up some CSF flow in my brain, not me feeling all better). I will get an MRI in January to check on things. Then I should know more about how I can proceed with my life. lol.

In the meantime, I have been instructed to keep resting as much as I can, not lift anything heavy, all that usual post-op bullshit. But... I was cleared to start driving short distances around town and best of all....TO SWIM!!! YAY! This makes me ridiculously happy, since it's literally my favorite activity in the world. Guess who's going fucking swimming tomorrow?!? I'm not gonna swim a freestroke mile or anything, but just to get in the water will be awesome.

And in more awesome news, I got to pig out at the North Market with Carolyn today. Always worth the 2000 calorie lunch I end up getting.

BOOM.

Thank you, America. I knew I liked you!

That's all.

A tale of two healings

Though I haven't yet blogged about it, my first decompression surgery was a sucky horrible fail. I will tell the full story one of these days, when I'm not still hanging with my buds, valium and oxycontin. Cause Katie no write so good on those.

But I want to talk a little bit about the healing differences between the two surgeries, because they are already so apparent. One of the worst parts about the aftermath of my first surgery was that I dealt with infection, rejection of sutures, and wound dehiscence for not one...not two...but SEVEN months. One of the other sucky parts is that my surgeon at the Cleveland Clinic was just completely neglectful in treating this deep-seeded infection and I had to deal with it for so long, which was just shitty and borderline traumatic. Just when I thought it was healed (I'm talking MONTHS post-op), it would break open again, my lymph nodes would swell, and I'd spit another so-called "dissolvable" suture. And do another course of antibiotics. My GP was so angry for me. Since my Cleveland Clinic neurosurgeon was always epically unavailable, my GP was frequently left trying to treat me and this gaping wound that led straight to my brain. It was a mess.I had my surgery in May '11, and in January '12, I was still dealing with that crap.

This was my incision two weeks after my first decompression (you can, as always, click to enlarge - but do you really want to?):

And this is my incision two weeks after my second decompression (taken yesterday):

Are we seeing the difference here?

I even had (and got on top of) an infection in my current incision. And it still looks this awesome. It took months and months for my first incision to look this good. My current surgeon's office is HOURS away, at OSU, and they called to make sure I was getting treated with the appropriate antibiotic. And when I accidentally told them the wrong dosage I was taking, they called me back to make sure I was mistaken about the dosage (I was) because I should be on a higher dose to clear it up fast and totally.

It's really too early to tell if this decompression is going to be successful. But so far, I could cry with happiness that my incision is actually healing. It's CLOSED. It's not opening or spitting nasty pieces of nylon. This gives me a lot of hope that maybe the internal healing will be similarly great. And maybe I'll dare to hope that I'll get better and ditch some Chiari symptoms, even though that's not the "official" goal of this surgery.

It also makes me all the angrier at my first surgeon, and at the Cleveland Clinic as a whole. I'm trying not to focus on that right now. I'm kind of over feeling pissed at them. For now, I'm gonna focus on being happy with OSU, and happy to have a surgeon who cares....not only who cares, but who writes me emails, from his iPhone, signed with his first name.

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