October 19, 2017 is a day I will remember for the rest of my life. I may have been unconscious for most of it, but I was also very briefly dead. That’s a huge thing to bounce back from- even if you can’t remember it.
If you haven’t read any of my other blog posts:
Hi! My name is Kaylee, and I was born with Chiari malformation. It’s a congenital condition where my skull is too small to house my brain properly, so 17mm of my cerebellum is wedged into my neck cavity and shares space with my brain stem. It also affected the shape and quality of my spine, ribs, and left hip.
While my specialist assured me that I am not the worst case he’s ever seen, he was still shocked that I had been able to walk into his office and hadn’t needed a wheelchair since birth. My only answer to this is that I was diagnosed with this condition after being hit by a truck at the age of 30, and everyone just thought the symptoms of my condition were me being dramatic, so they never really paid attention when I said my back hurt at the age of five. My massive, vomit inducing migraines were blamed on puberty. My chronic fatigue and nerve pain was blamed on a bad attitude and no motivation. So when my diagnoses came along, there was a certain air of embarrassment and horror that later melted into general disinterest.
A lot of things happened before surgery. A lot of tests, conversations, avoidance, and what have you. There was even a hurricane that put a tree through our roof and destroyed my business. It left us without water and electricity for 11 days, in triple digit heat and humidity. I highly do not recommend that experience to anyone. Ever.
By the time I got the call to go to the hospital and speak to my doctor with the surgeon present, I’d already been so stressed that I started shutting down emotionally. With my background, it’s a coping mechanism I learned young to get me through the hard stuff. Shut the bad feelings out, and try to joke your way through it.
I’d had about 7 MRI appointments before this final meeting, and I knew at this point the verdict must not be good. After a long wait in a cold hospital, I finally got in to see the my specialist and then the surgeon. They said that the ventricles of my brain were so badly compressed from the pressure in my skull that they weren’t working properly, and they were so compromised that (and these are the doctor’s words) I needed emergency surgery or I could die at any moment.
I don’t have the words to express how it feels to be told to your face that you could die if someone doesn’t open up your skull. It’s bizarre. It’s unreal. I was healthy all my life, until one day someone told me I wasn’t. You look back and remember all those times you played hockey in high school. Or got tackled in PE. When you felt weird and sick and couldn’t explain why, so the other kids made fun of you and called you a freak. When your own family criticized you for being a lazy slob when your body literally hurt so badly you could barely move to do simple chores.
I am dyslexic. I have brain damage that has given me cognitive problems. I have migraines that are so bad they’ve left scarring on my brain. My spine is deformed, and I have stenosis. My arms, hands, and legs go numb, and I lose the function of my limbs spontaneously. Sometimes I just fall. I also have a hard time with food. Eating is hard because my throat forgets to swallow, and I end up choking. I’m also always nauseous. So I want to throw up while eating, and have actually done so many times since I was small. Add to this that my back ALWAYS HURTS. Always. Since I can remember. I received three herniated discs and nerve damage in the car accident, and that has only added to my back pain.
This condition is no joke. No one knows what causes it, and a lot of doctors don’t really understand it. It took me four years to find a doctor that would actually take my condition seriously. The three I saw before him told me that it was no big deal and I was fine. I found a specialist, and suddenly he knew what was wrong and he did his best to help me. I didn’t want surgery to be on the table. But if I’d listened to the other doctors, I probably wouldn’t be here now.
The two weeks that followed making the appointment for surgery are a blur. I got tests done, and spent a lot of time reaching out to people in case I never got to speak to them again. I can admit that I was very scared. My efforts to speak to family weren’t very successful (phone lines were still down from the hurricane), so I did what I could.
The morning of surgery we went in at 5am. I’d overpacked just in case. My husband was going to stay with me in the hospital. It was only supposed to be 2 or 3 days, and then I’d be able to go home.
I started getting very nervous when they put me in that purple paper gown, and put the IV needle in my hand. I hate that needle. All the nurses were really great, and I tried very hard to stay calm because they had such great attitudes. When the anesthesiologist came to hook me up, I don’t think I’d ever been so grateful. He explained to my husband how it all worked, and it distracted me from my nerves.
By the time they came to wheel me into surgery I was already floaty. I remember joking with the guy who wheeled me into the surgery room, and making him laugh by letting him know I’d be there waiting for him when he got back as he stepped away for a moment. And that, thankfully, is all I remember.
The next thing I knew someone was calling me awake and telling me that I had a button in my hand that I could push if I was in pain. I immediately remembered where I was, and tried to be as polite as possible while saying thank you to the nice voice. Being polite to the hospital staff WAS VERY IMPORTANT.
(In fact, while on meds, I said thank you to the nurses so much, they told me to stop!)
My surgery was scheduled for early morning, and it was very late when I finally woke up enough to realize I had been moved to my own room. The procedure was only supposed to last three hours, but I later learned from my husband that while he waited, those three hours came and went and no one would tell him why I was still in surgery.
Seven hours passed before they finally told him I was ok.
He told me that they explained to him that I had developed anemia sometime after my initial blood tests, and right before my surgery. Now, they do a blood test before surgery, just to make sure. Apparently the lab tech had not gotten to my blood sample in time, and they had gone ahead with my surgery anyway.
So because I was anemic, my blood was not able to clot properly when they started cutting me open. I began to hemorrhage, and there was a scramble to keep me from bleeding to death. Unfortunately for me, the faulty genetics I had been gifted also seems to extent to other areas of my body. Every time they put in a needle, a vein would explode. They ended up having to go through my femoral artery. I then needed to be resuscitated, as it seems my body was just hell bent on not having a good day.
So my surgery lasted four hours longer than it should have, and I woke up covered in bruises (that really freaking hurt). I would also later develop arrhythmia from the anesthesia, and just not stop vomiting on everything and everyone. Also, do not recommend.
Because of the complications and my bad reactions to his, I actually spent five days in the hospital. I was very grateful to get through the experience with what I felt like was only a small amount of bad. Because goodness knows it could have gone so much worse.
Your definition of fear changes when you go through something like this. Before this, I was afraid of so many things I find boring now. I think I understand myself a little bit better. I trust myself a lot more. I don’t want to live in a way that would make me regret, if I didn’t come out of that room. Not in the ways that matter.
So thank you to Dr. Barth Green, and his surgical team. They kept me alive that day, and my brain is working much better for now. And thank you to the wonderful nurses who took care of me when I was at my most vulnerable. And to my husband. Who spent five days sleeping on a hospital room sofa and woke up at 2am to be vomited on. I couldn’t have mad it through any of that without all of them. I’ll keep striving to do my best because you all did your best for me.