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.

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!

What this about your brain, now?

Let me begin this blog by stating my intentions for starting it. I am writing this blog both as an effort to raise awareness about Chiari, and as a personal record of my journey through it, and (hopefully!) out the other side. I am hoping to eventually use this space as a platform to educate my friends and family about what exactly is going on with me and my brain ...and maybe it can help other Chiarians do the same. Along the way, as I hopefully conquer Chiari, it may become a space for me to blog more about my life, children, and the things that I love.

But for now ...we need to have a little talk about my brain. I'm going to structure this post as an FAQ. As someone with a little-heard-of neurological problem, I get questions every day. Unfortunately, Chiari is something that is very difficult to sum up for someone in 60 seconds or less. Even the people closest to me sometimes have a hard time understanding what I'm dealing with. Tell someone you've got cancer, and they know what that means. They understand what you're facing, they know someone who's been through chemo and what that looked like. If you tell someone you have Chiari, or one of the other names for it - hindbrain herniation, or tonsillar ectopia, you are generally met with silent confused blinking and blank stares. Who can blame them? It's not exactly a household name! Let's begin by going over some basics.

What is Chiari Malformation?

In the simplest terms, Chiari Malformation is a neurological condition whereby the contents of your brain do not fit fully into your skull. The bottom part of the brain, the cerebellar tonsils, become herniated through the base of the skull opening. This herniation acts as a cork, blocking the flow of cerebral-spinal fluid, or CSF for short. This can lead to several serious neurological issues, such as spinal cysts, syringomyelia, brain stem compression, nerve damage, and obstruction of CSF flow. The neurological system exists in a delicate balance, and any disruption of normal function can cause a whole array of symptoms in virtually every bodily system. The standard diagnostic criteria is a herniation of 3-5mm. Mine is estimated to be about 15mm.

What does that look like on an MRI? Can I see a picture of your Chiari?

Sure! I am a visual person, so it helps for me to be able to see what exactly we're talking about here. Since I happen to have an image handy of my brain, I can show you what it looks like. The first picture is a normal, non-Chiari brain. The second picture is my brain. See? It's so big and awesome, it can't even fit in my skull! :) I will be posting some more detailed pictures in another post, for you science nerds out there.

What symptoms does Chiari cause?

Chiari is a tricky disease. Some people can go their entire lives not knowing they have a brain herniation. It does not cause them any problems, and they will live a normal life. Others are plagued with problems from a young age, as young as infancy. Most people with Chiari Type I (which I have) are diagnosed as young adults in their 20s or 30s after years of symptoms that are notoriously hard to describe (and thus notoriously hard to diagnose). Since there is such a huge variation in symptoms in Chiarians, I will list my own symptoms:

- Pain. Daily, chronic, 24/7 pain. My pain is mainly in my neck and upper back and shoulders. I also have pain that radiates down my right arm and into my fingers on that hand.

- Headaches. Almost all Chiarians have very severe headaches, from the compression in their brain and nervous system. I have a headache just about every day. This is made worse by any change in position, as well as "Valsalva manuevers" - these include laughing too hard, crying, sneezing, coughing, or straining.

- Pressure in the head. This goes hand and hand with the headaches. The longer I am upright, the worse the pressure in my head is. It builds through the day. It is made worse by bending over and then standing, exertion, or external pressure changes (such as flying on an airplane). In my case, I have a CSF obstruction in my brain, so the pressure is actually from the fluid dynamics not being able to equalize properly. A normal person can bend over, pick up a piece of paper, and stand back up again...without a searing pain and pressure in their head. I can't do that. My head does not have the ability to comply with the small fluid fluctuations involved in a simple task such as bending over. The pressure and pain from doing that can last for hours.

- Muscle twitches and spasms. My body twitches constantly, all over. This is likely from nerve compression and damage. The muscle spasms can be quite debilitating, and occur most frequently in my neck. Ever turn your head too fast, and get a sharp painful crick? My muscle spasms in my neck feel exactly like that, only that sharp pain will last for days. During this time, I lose all mobility in my neck and am unable to turn my head.

- Weakness and fatigue. This is pretty self-explanatory! If I ever cancel on you at the last minute because I'm too tired to go out, don't be offended. Sometimes, I just have to lay down. I think this level of fatigue is mostly due to the bodily stress of being in chronic pain. In any case, I'm very tired most of the time. Insomnia is also very common with Chiarians, due to underlying changes in the brain. Luckily I combat that with my BFF, Ambien.

- Eye pain and pressure, and painful eye movement. Again, this is related to level of physical pressure in my head - both from the "clog in the pipes" which is my brain herniation, and the CSF obstruction. I do not get a normal level of CSF to my optic tracts, which causes intractable eye pain. It is very painful for me to look hard up or to the side. I also have visual disturbances, including blurred vision, seeing flashes of light or "floaters" that aren't really there, and double vision while lying down.

- Numbness and sensory loss in the hands and feet. This is the result of nerve damage. My feet feel like they are asleep and have pins and needles all of the time. I have lost some ability to sense the difference between hot and cold. I often burn myself by grabbing things that are too hot, because I can't feel the temperature. I also have patches of numbness in different areas of my body. This can have some advantages, though - last time I was in the hospital, they gave me a huge shot in the arse, and I didn't feel it a bit! :)

- Dizziness and light-headedness. I sometimes have a hard time with driving or going to the store, because I feel as though I will pass out. Usually this is the worst when my pain is not under control.

Some other common symptoms that Chiarians can experience (but I have so far dodged) include:
- Difficulty swallowing
- Bladder issues/incontinence
- Nausea or vomiting
- Seizures
- Ringing in the ears
- Facial pain
- Drop attacks

What can be done to treat Chiari? Is it life-threatening?

Although there are many ways to manage the symptoms of Chiari, there is no true cure for Chiari. Most of the care is aimed towards alleviating pain and nerve issues, so that a good quality of life can be maintained. If the Chiari is progressing, and causing CSF obstruction, significant nerve damage, and/or spinal cysts, surgery should be strongly considered. But, even surgical intervention is aimed to halt the progressing of Chiari; it can not "fix" your brain in the truest sense. It is a treatment, but it is not a cure. A lucky minority who have symptomatic Chiari will find their symptoms all alleviated from one decompression surgery, but they truly are a minority. I will talk more about Chiari surgery in my next post. Once you have Chiari, there will be life-long modifications that you will need to adhere to and be attentive to.

Some subtypes of Chiari are life-threatening, but the majority of people have Type I, which is not often fatal. The fatalities of Type I Chiarians are most often due to post-operative infections, surgical complications, meningitis, swallowing difficulties and aspiration, medication overdoses, and syringomyelia (a type of spinal cyst common to Chiarians) which extends upward to the brain. But most people with Chiari Type I will not find their life expectancy shortened.


Since I am starting down the barrel of my second decompression surgery (8 days and counting!) I will be back on Friday with another post about Chiari surgeries, what they entail, and what they can and cannot do.