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.