Ok, so I'm going to go through the whole story the best way that I can. If I tend to ramble, I apologize. I have many, many thoughts running through my malformed brain, so it's hard to type them as quick as they come to me. First, I know that this is no big deal compared to what a lot of people (even people I know) have been through. This absolutely could be worse, and at the end of the day, I'm fortunate. Even though I'm going to have a little bit of a pity party and whine in the following paragraphs, I recognize that I'm blessed. Second, let me say that I do not want my blog to become all about my "condition." As far as I'm concerned, it's no big deal. If I was having my tonsils removed, I wouldn't devote a blog to it. Just because it's called something else, in this case - brain surgery, doesn't mean it needs an altar. There are many people who endure things far worse than this; there are many people who create blogs as a way to process what they are going through; there are people who blog about their conditions as a way to give/receive information. I'm not doing any of that. This isn't life-threatening. I don't need to cope - I had my meltdowns, so now it's onward and upward. And I'm not in the business of really giving information - what I've learned is that there is a lot of bad information out there, and I don't want to contribute to the problem. Additionally, this isn't a process. There is no story and no updates. Otherwise, it might warrant more attention, but there's really only enough info for 2 or 3 posts. I will blog about it now, because I want to tell you about it. And then I will probably blog after my surgery because, really, what else am I going to talk about? And then, hopefully, that will pretty much be it. So, moving on... (and this will be long, so bear with me or take it in intervals)
If you are close to me or read my blog, then you know that in November/December, when I was 7 months pregnant, I got a sinus infection, bronchitis, an upper respiratory infection, etc. You name it, I got it. This entire time, I had a terrible headache in the back of my head that never went away. I've always suffered from migraines, but this was different. Every time I coughed, sneezed or blew my nose, it felt like the back of my head was going to explode. I chocked it up to a sinus headache and didn't give it another thought. Headaches are just a part of my everyday life, and I know how to deal. No biggie.
I was incredibly sick from then up until I gave birth in January. During that time, I was coughing violently and vomiting often. Not from nausea, just from coughing. I was miserable. And then in January, I developed preeclampsia, was hospitalized twice and ended up being induced 5 weeks early. Despite all of that and Ella spending four days in NICU, I now have a beautiful, healthy baby girl. As soon as Ella entered into this world, every single cold symptom I had disappeared, but the headaches didn't. Considering I wasn't getting any sleep and wasn't sleeping more than 2 hours at a time, I attributed the continuation of headaches to that.
But then Ella started sleeping through the night and I started back to work, and I continued to have a headache every single day. Always the same - back of my head. Most of the time, I just woke up with them. But coughing, sneezing, laughing...anything like that...either brought it on or made it worse. They also started to progress to causing pain in my neck. Most days, I couldn't (can't) turn my head. I definitely couldn't check my blind spot when I was driving. There were days that I couldn't even look down at Ella when I was feeding her. I couldn't lean down in the floor. My movement was incredibly limited. Everything hurt. The only relief came from lying down. The pain would almost completely disappear when I would lie down. This was another sign that it wasn't my normal headache. Anyone who suffers from migraines knows - simply lying down doesn't erase it.
So I decided to go to the chiropractor. Bless his heart, he tried. But he made me feel worse. I went several times, and after every visit, I hurt more than I did when I walked in. So I decided to go to the neurologist and rule out anything serious.
During my initial neurologist visit, he examined me and said it sounded like I had a bulging or herniated disc and that we needed to do an MRI to see what was going on. Then, on my return visit to review my MRI, he told me that I actually have what is called a chiari malformation. It's a congenital brain malformation in which the bottom of my brain, called the cerebellum (or specifically, the cerebellum tonsils), protrudes into my spinal canal. It occurs when part of your skull is abnormally small or misshapen, therefore pressing on your brain and forcing it downward. When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid, which protects your brain and spinal cord. This can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. The pressure from the cerebellum upon the spinal cord or lower brainstem can also cause neurological signs or symptoms. It's uncommon, but not unheard of.
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| This is what a chiari malformation looks like. A normal skull and brain are on the left. An example of my ginormous brain is on the right. The cyst in the spinal cord is a symptom that can occur if left untreated. |
Most people who have it never experience any symptoms and live life never knowing. But for some people, like yours truly, symptoms start appearing in adulthood, usually in your 20s or 30s. So basically, my skull is too small for my genius, ginormous brain. And the fact that it's trying to stuff itself down my spinal canal is why I feel like the back of my head and neck are going to explode at any given time. Luckily, headaches and neck pain are the only symptom I have. It's possible that my tendency for passing out is from my chiari, but there's no way to know for sure. Other symptoms include problems with balance and motor skills, numbness in the extremities, dizziness, difficulty swallowing, sleep apnea, vision problems and slurred speech.
After a diagnosis, it's pretty black and white. Either you fix it, or you don't. I'm not in love with my neurologist, so I skipped the neurosurgeon he recommended and did my own research. I ended up at Emory with a neurosurgeon I love. I've also been incredibly fortunate to have people well connected within the medical field who were able to reach out to their contacts regarding my selected neurosurgeon. They've all reassured me that my doctor is the best there is to treat this condition. So that helps a lot.
My appointment with the neurosurgeon was Thursday, and again, it was black and white. Kyle went with me so that we could both ask questions and learn as much as we could before making a decision. I asked what would happen if I chose not to treat it. His answer: A life with chronic pain. My daily headaches would almost certainly get worse, and I would have to take medication daily for pain management. It's also possible that I could develop the other symptoms that are common with chiari malformation. It's also possible that I would develop syringomyelia, which is a fluid-filled cyst that develops within your spinal cord. And that beauty can lead to a whole host of problems, which I'd rather not explore.
So basically, that's it. I'm having brain surgery at Emory on July 5. My pre-op is on July 1. Here's hoping that my brilliant neurosurgeons don't have a rip-roaring good time on the 4th of July. I don't need any hungover brain surgeons cutting my beautiful head open. That brings us to the actual cutting open of the head...
The procedure is called posterior fossa decompression, and it will only take 2-4 hours. First step, they have to shave the back of my head. This has been the second biggest reason behind my meltdowns (I'll get to the first one later). I love my hair. I've always loved my hair. Most of the compliments I get are about my hair. And they are going to shave it. Granted, it's not all of it. It's not even most of it. But "some" is more than enough for me. I know it's terrible to complain about it because there are so many people who lose all of their hair, and in that respect, I'm incredibly fortunate. But I'm still upset about it. I'm going to have a 2 inch wide strip that runs from the top of the back of my head down to my neck. My surgeon said that my hair on top would cover up my buzzcut and gnarly scar, but it doesn't comfort me. They are still shaving my head, and it will take a really long time for my hair to all be the same length again. I'm sobbing now, and just thinking about it...I can't breathe. I know it's vain. But I don't care. I don't want them to shave my hair.
So after someone who doesn't cut hair for a living shaves my head, they are going to make an incision that runs down the middle of the back of my head to the base of my neck. Then, they are going to remove my C1 vertebra and a small bone from the back of my skull, relieving pressure by giving my brain room to expand. Depending on what they find, they may also carterize the bottom of my cerebellum tonsils so they shrink up. After they remove the bones, they will open the dura, which is the covering of the brain, and replace it with a synthetic material that stretches. That will enlarge the opening and give my brilliant brain even more room. Then, they'll sew me back up. People who have this surgery are afterwards knows as "zipperheads" due to the lovely scar we're left with. Yeah, I'd rather you just call me Ashley. Hell, call me Sarah. Just don't call me a zipperhead. Power to the people who like it, but that's just not me.
After the surgery is complete, I will spend a day or two in ICU, then be moved to a regular room for a few more days. The biggest reason is pain management. Apparently, this particular brain surgery is incredibly painful because they cut through all the muscles in your neck. Awe-some. I have an incredibly low pain tolerance, so I'm definitely not looking forward to this part. But, the way I'm choosing to approach it is - thank you, God, for getting me to this part.
The three biggest complications (after the real biggies - you know...paralysis and death) are a collection of fluid (a big m word that I can't remember), infection (meningitis is the biggie) and leakage of spinal fluid. The surgeon told me that almost 100% of people have the fluid build-up, but that it usually remedies itself. This is because the patch they sew over my brain isn't watertight, so there is a little leakage. He said that if I can get past 8-12 weeks and not experience infection or spinal fluid leakage (which is the most serious one), then I'm as good as home free. One of my main desires was that in a few months, I could pretend like this never happened. It looks like that may be possible.
I did a lot of research after I found out what my problem was (shocked, right?), and I really did myself a disservice. There is a lot of great information online, but there was a lot of bad information too, and all it did was terrify and sadden me. One small example - multiple blogs of people who had this condition and surgery said they could never, ever ride rollercoasters again. If you know me, you know I love Disney World more than anyone my age should ever admit. Sorry, but I do. And I've been counting the days until I can go to the Wizarding World of Harry Potter. So when I read this, I told Kyle that, if that were the case, he was taking me to both places so I could ride everything once more.Luckily, my surgeon told me that this isn't true. I also read that I couldn't pick my child up for 6 months and that I couldn't drive for 3 months. These are partly true, along with some other junk, so that's where I'm heading with this now. The other downsides, other than them shaving my head, having a gnarly scar and enduring quite a bit of pain:
5. I have to miss Kings of Leon, which I have non-transferrable, non-refundable tickets for. I also really, really love them.
4. I have to take 6 weeks off work. This wouldn't be such an issue if I hadn't just taken 12 weeks off for maternity leave. No, I don't think I'm THAT important. Yes, I work with ROCKSTARS, and I know they can handle it. But that doesn't matter. I have a responsibility to them, which I take very seriously. And so far, this year, I'm failing them miserably. Additionally, my most outstanding meltdowns regarding this topic have been with them. In addition to failing them, I'm probably driving them bonkers.
3. My sister and her husband are going to be in Las Vegas when I have my surgery. I'm thrilled for them, and the downside isn't that she won't be there. The downside is that she wants to cancel her trip. I've begged her not to, and she has agreed. And she better keep that promise. I'm already inconveniencing way more people that I've ever wanted to, and I'm doing it for the second time in four months, and I don't want to add her to that list. Read this, Brittney: if you cancel your trip, I will absolutely pop a stitch. I mean it. Thanks to the time difference, you will be asleep in Vegas when I'm having this thing done, and when you wake up, it will be to a phone call that everything is A-OK. Got it? Good. I love you. XOXO
2. I'm inconveniencing everyone I love. I will need someone with me round the clock for 6 weeks. I'm putting them through something for the second time in four months, and it's not fair to them. My parents, Kyle's parents, our sisters (and brother-in-law)...and especially my amazing, wonderful husband. He spent every night in the hospital with me when I was there for the two weeks surrounding Ella's birth. And I'm doing it to him again. Not to mention the fact that I'm coming home with a less sexy back of head and neck. No more head rubs for this girl. Or ponytails, for that matter.
1. The number one thing, the thing that has caused me the most heartache and has been the biggest source of my meltdowns, has everything to do with my beautiful baby daughter. I'm supposed to be planning her first beach trip, not brain surgery. She and I have matching birthmarks on the back of our necks, but after they cut through my head and neck, they won't be the same anymore. She will never remember this, and I'm eternally grateful for that. But I can't pick her up for 2 months. That's better than the 6 months that I originally read, but still. I can hold her, but someone will have to hand her to me. I can't be left alone with her because I can't pick her up. The most important job I have is to be her mother, and I can't really and completely do that for 2 months. Luckily, there is no shortage of people who want to take care of her. But I just wanted this year to be fun and carefree, and so far, it's not shaping up that way. The most important thing, though, is that I come home to her in the end. I will work through everything else.
Ok. So I think that's it. I told you that I'm having surgery, how I found the problem, what it is, symptoms, treatment, complications and downsides. I think that covers it. So let's end on a positive note, shall we? This really sucks, but it could absolutely be worse. I'm going to a great hospital and have an amazing support system. And when it's over and done with, I will have an improved quality of life - no more headaches, no progression of the condition and no further symptoms. And one day, when my baby girl has a problem, I will be able to tell her how I handled a less than fabulous situation with humor and rationale...after a few meltdowns, of course. Not only that, but it gave me a great topic for my 1,000th tweet, and I have a wide variety of Halloween costumes now open to me. I'm also looking forward to the perspective that I'm sure to have after this is all over. What is spilled milk, really, compared to this? Nada:)
So...that's it. Carry on:)
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