Chiari Who?

In mid- December of last year I finally got to the neurosurgeon’s office after months of trying to make the appointment. I kept having to reschedule due to scheduling conflicts. I wanted to see the surgeon about potential interventions for my unbearable neck pain of many years. I had tried physical therapy to no avail, and had two injections of steroids into C6. Everything seemed to make the pain worse, so my last resort was visiting the neurosurgeon. The pain is debilitating at times, with the nighttime being the worst. My other nearly debilitating symptoms include vertigo and dizziness, and a general feeling of being off-balance. It is exhausting to keep myself upright all day. And it is very painful in my neck region at night, so I’m not sleeping very well. Needless to say, I wanted answers and help.

I had nothing to fear as I waited for the doctor to enter the room and review my cervical spine MRI imaging from June 2025. I had no reason to think anything would go awry because I had read the report and it didn’t seem very much changed from my previous cervical spine MRI done in 2020. For some reason, an MRI can look almost normal and a person can have severe symptoms, or conversely, the MRI can look like a train wreck and the person can feel fine. I would prefer the second option, but that’s not how I roll.

So when the doctor entered the room, and after the pleasantries and introductions were made, he told me he didn’t see much wrong with my cervical spine. Sure, small herniations, and a little bit of a bulging here and there, but nothing warranting surgical intervention. “But, there is something I want to show you. Something else.”

I could feel the frown forming on my face, and the slight anxiety building in my chest. The doctor asked me to pull my chair over to look at the image on the screen, which was of course my cervical spine and the bottom portion of my skull and brain. “See this? This is your cerebellum. The cerebellar tonsils are hanging down through the opening at the base of your skull and into C1. You have a size ten skull and a size twelve brain.”

“I beg your finest pardon?” I asked in a statement. I was stunned and nearly speechless, but I think he just said I had a big brain, so there’s that.

“You were born with this congenital condition that is known as Type I Chiari Malformation. I believe all of your symptoms are caused from this malformation. Your brain is constricted and requires decompression. Your symptoms of dizziness, migraines, gait imbalance, limb numbness, and various others are caused by this compression. Cerebral spinal fluid can also be cut off leading to problems for the brain. The fix for this is a craniotomy to remove a piece of the skull as well as a laminectomy for C1 so that the brain hanging down has more space. After we remove those pieces, we put a band that we take from your hip and place it on each side of the skull so that the brain rests on that.”

Chiari Malformation – the herniated tonsil is a portion of the brain – it is the tonsil of the cerebellum. Not a lingual or palatine tonsil, which are found in the mouth. Just fyi stuff…

I really don’t remember thinking anything other than How did we get down this road? How are all of my symptoms being caused by my brain sagging with droopy drawers out of the base of my skull into my spinal canal? How is the treatment for this a craniotomy and a laminectomy? Why is my brain too big for my skull? Who even has this?! Not very many people, I can tell you that. In fact, I know of one other person who has this, and that person didn’t know anyone who had it either.

This is technically the decompression surgery, but the bones are bigger than this. This looks really cute and minimalistic. In my opinion, a craniotomy and a laminectomy are not “small sections of bone,” and the size of the scar for the surgery is definitely not “small” 😑

Switching tracks for a moment, I was scheduled for a brain MRI to look for an acoustic neuroma which my ENT suspected, since I suddenly lost a lot of hearing in my left ear a few years ago. But now I needed the brain MRI to confirm the Chiari Malformation. And then I got thinking: why did no one mention this on my cervical MRI report from 2020? This was when I first developed symptoms. And why did no one mention this on the cervical MRI report from June 2025? The neurosurgeon said it’s very common for them not to mention it. And, in fact, when I did finally get the brain MRI at the end of December, the malformation was yet again not reported. And because they neglected to perform sagittal views on that study, the doctor couldn’t confirm the diagnosis. I then had to get another MRI of my brain which did confirm my diagnosis.

I recently returned to discuss options and the game plan. I’ve had several months to research success stories and not so successful stories as a result of decompression surgery. I’ve also been instructed by a trusted source to get a second opinion. When I returned to the surgeon’s office, he said the surgery is not an emergency. I could schedule it in five years or I don’t ever have to do it. My CSF is not being blocked off, so my brain is receiving the nutrients that it needs. I don’t have something called a syrinx, which is a cyst that forms in the spinal canal as a result of this malformation. Seven millimeters of my cerebellum is hanging down and makes itself known, however. Migraines, dizziness, vertigo, pain up the back of my head and down my shoulders, a constant feeling of being pulled and off-balance when I walk, extreme fatigue at the end of the night, vertigo when I tilt my head back, and the inability to lie on my back because my brain is essentially right under my skin and feels compressed in certain positions – these are all symptoms I deal with on a daily basis. And for now, I will continue dealing with them. I like my skull pieces where they are, and I do not want to remove the first vertebrae of my spinal cord. I have no restrictions other than if it hurts don’t do it. Well, I’m not allowed to ride roller coasters but that’s not a problem for me because I don’t like them anyway. But doing nothing carries its own set of consequences: I will still have these symptoms and I will need to manage them the best I can, but it is incredibly fatiguing. I’m going to seek a second opinion at a university hospital in a large city. Perhaps there are other options for me to get my brain decompressed and relieve my symptoms. I don’t want to continue to live on the struggle bus, but I don’t feel comfortable removing a large section of my skull and my first vertebrae. It’s my personal belief that because I’ve had this since I was forming in utero, my body has adapted to this condition. It’s not perfect, and in fact, it’s really rather terrible at times, but what happens when you start removing pieces of your body? What happens when you remove the stability the body has always known? I’m not fully convinced that in the case of an elective surgery, this is the best route at this time. My skull may be too small for my brain, but it’s still my skull. It protects my brain. And the first vertebrae of my spinal cord is important. Every vertebrae underneath of it is important. They all rely on the first one for stability. I have concerns.

The first few days of receiving this diagnosis had me in a state of shock. I’m still not sure which parent to blame for my big brain and tiny skull. So I looked at the sky and I squinted my accusatory eyes at both of them. Also, within the first few days of this diagnosis, I nicknamed the malformation Kyrie. I made up a little song based on that 80s song by Mr. Mister – Kyrie eleison. I pulled these lyrics from the song.

Kyrie eleison down the road that I must travel
Kyrie eleison through the darkness of the night
Kyrie eleison where I’m going, will you follow?
Kyrie eleison on a highway in the night

And this is how I altered them:

Kyrie lays on the top of my spine

Kyrie lays on C1

Kyrie lays on and will always fall down

Kyrie lays on my neck all through the night

As for me and Kyrie, we will be getting a second opinion in the coming months. And in the meantime, I will try to educate people about this rare condition. It’s been a long journey to get answers for my migraines and all of these other weird symptoms. Let me know in the comments if you or anyone you know has a Chiari Malformation.

(Sorry guys, I tried to embed the video for Kyrie eleison by Mr. Mister, but WordPress is not allowing it. Kyrie original lyrics ©️ Mr. Mister)

blogging · books · chick lit · favorite author · fiction · history · non-fiction · Outlander · poetry · prose · reading · Short story · Writing · Zora Neale Hurston

Their Outlander Match

June 7, 2025July 26, 2025 Amy6 Comments

List three books that have had an impact on you. Why?

Their Eyes Were Watching God by Zora Neale Hurston – this is my all-time favorite book. I needed three credits in English so I took a summer course at my university and was introduced to the Harlem Renaissance. It’s not an exaggeration to say it changed my life. There was something magical about Ms. Hurston’s use of language. It envelopes and evokes. I still have the copy of the book for that class tucked away safely on my bookshelf. I do not let anyone borrow it.

2. Outlander by Diana Gabaldon – this is my second all-time favorite book. I had no idea what I was getting into when I started this book and series. I sent an email to the author when I finished this book and she replied. I printed it out and tucked it into the paperback, which has been read so many times it’s earmarked with love. Yes, I have the rest of the books too. Yes, I waited for what felt like 65 years for the show to be created. Yes, I’m waiting on season eight during the usual Droughtlander. But, I should say upfront the books are nothing like the series because the books are typically 1000 pages of genius storytelling, and though the series is based on the books, it in no way comes close to the original. This book is impactful due to its ability for the reader to step through the stones, as it were. It’s a place to get lost in if you’re looking to get lost.

This isn’t my copy – mine is old and well loved and also I do not think it states on the cover that it is a New York Times best seller

3. Love Match by yours truly

Yes, it might sound a little strange to say this book impacted me a great deal, but if you’ve written a book, you know what I’m talking about. It doesn’t matter if your book was published or not, if you have written a book and it is yours, it has changed your life. If you tell other people, and they read your book, it changes you even more. When people start to have opinions about your words, that is probably the greatest impact. It takes a lot of courage to write and have other people read what you’ve written. One could even call a blog a type of book. It’s a book that keeps writing itself each day. It’s something that means something to the writer, but also it’s something that the reader takes part in. And it takes courage from the author to post their words. Words on a blog can be equally if not more impactful than an entire bound book. But that’s a different subject for a different day.

Incidentally, when I was looking for an image of my own book to post here, I found out my book is being sold on eBay for $29.08. Just a suggestion: my book isn’t that expensive brand new. I’m not sure that the seller is going to make any profit after shipping – unless of course, they found a brand new copy of my book. But another question then begs to be asked: where is my royalty check?

blogging · daily prompt · Humor · non-fiction · prose · Writing

A Prompt I Can Answer!

April 11, 2025June 4, 2025 Amy20 Comments

Describe something you learned in high school.

I’ll get to the prompt in a minute. I’m hoping this is the start of me being able to answer the prompts again. Truth be told, weeks ago I got a survey from WordPress and I really let them have it about the prompt problem. They didn’t exactly promptly fix the problem, and I don’t know if they did fix the prompt problem, but I can answer this one.

While I have your attention, I no longer get email notifications when everyone/anyone posts. I did not change my settings. Is anyone else having this issue, or has everyone left the site and no one is publishing anything anymore? Please let me know in the comments.

What did I learn in high school? I learned that sarcasm is my gift to the world and my gift isn’t always well received.

I took algebra two for my senior year. I should’ve been more advanced than that, but I am not a math person. We weren’t allowed to take our math books home because there weren’t enough books, so we ended up using them during class. I don’t recall much homework. If you can’t bring a book home, what could your homework possibly be? I didn’t like my teacher, but I did like talking to my friends during class. I didn’t pay attention in this class. It was my senior year, and I had three study halls because I didn’t need any more classes. At the start of school year I set myself on auto pilot and cruised through like the main character in Office Space sans gutting a fish on my desk and wearing flip-flops.

I don’t know how other schools were, but in each of my subjects, there was a midterm and a final exam. There were also tests in between. As I mentioned, we did not take our books home and I don’t recall homework. I also mentioned I liked to talk to my friends during class. It would’ve been fine if my whispering didn’t cause laughter among my friends, but it did. On more than one occasion, the teacher shouted at me to stop mumbling under my breath to my friends.

Not gonna lie, I didn’t stop talking under my breath. I distinctly remember being sent out to sit in the hallway in a sort of hallway detention for the remainder of class. I didn’t see this as a punishment. I still don’t. I rather enjoyed chatting with people who walked by. I touched up my make up and I didn’t have to do any math. This hallway detention happened twice. I think it was the second time when I saw my Bestie in the hallway. She had the hall pass to go to the bathroom and just happened to find me sitting in the hall. We chatted for a few minutes. The teacher came out from time to time to check on me to make sure I was still there. Where would I go? Why would I get up? Silly man.

Can confirm this eye roll is similar to what landed me in the hallway – plus the mumbling under my breath thing

When it came time for the midterm test, I did my best, but without a book to take home, and not really giving it my all, I winged it. I made up formulas to solve fraction problems. After the teacher graded our tests, he announced – in a strained, pained voice – I had gotten the highest score. We were all in shock. I remember everyone turning to look at me with white eyes and I shrugged.

Let’s fast forward to the final exam. It’s late May, I’m graduating in June and I have totally checked out from all subject matter that didn’t involve graduation. I did not study for my final exam in algebra two. I probably didn’t even crack the book open. I continued to talk to my friends and my teacher continued to turn 10 shades of red when he yelled at me to be quiet. I was unbothered. We took our exams, and I guessed at almost every question. I did show my work, because in math you don’t get any credit if you don’t show your work. Imagine my surprise when the teacher announced I had gotten the highest grade yet again. (No, I did not cheat. There was no way to cheat and I would never. My grades were earned. From A all the way to F. And yes, I passed this class. I did very well, in fact, because I got the highest grades in the class for the most heavily weighted tests.) Everyone in class turned to look at me and I smiled. Then I laughed. And then my long suffering teacher almost suffered apoplexy.

I found out the following school year that my math teacher had retired. I like to think he had a long, enjoyable career and just decided to retire, but I truly feel I pushed him over the edge.

So what did I learn in high school? A couple of things. I learned how to put my sweatpants over my clothes so I didn’t have to change for gym. I learned that if you’re going to cut class, you should not cut the class where the teacher has a view of the parking lot and can see you leaving. I learned that I had a gift for writing. I learned my mouth could get me into a lot of trouble. And by trouble I mean hallway detention, which was actually fun. I learned that lunchtime detention was the absolute best. It was quiet and people brought your lunch to you from the cafeteria. I learned very little algebra, and to be honest, I haven’t needed it. I’ve needed the chemistry I learned at university, which was incredibly difficult for me to learn, but I did, and without any mumbling under my breath.

I learned that making people laugh was something I was good at and something that gave me joy. If it got me hallway detention, cool. If it got me lunchtime detention, even better.

Gratuitous James Spader gif from Pretty in
Pink because HELLO, IT’S JAMES SPADER #teamsteff

animals · Nature

That Time I Saved A Deer

February 26, 2024February 28, 2024 Amy15 Comments

Facebook reminded me yesterday of a thing that I did in 2018. I was driving to work at about five in the morning. At the time I was working 30 miles away, and had to be there by 6:30. I had to be very careful because it was still very dark and deer are prevalent. I would also see fox, but the deer are by far the most prevalent. They can do the most damage to themselves as well as to humans. It breaks my heart when I see deer deceased on the side of the road. I can’t even look. I can’t look at any animals that are deceased on the side of the road. I believe this stems from the time I saw my dog get hit by a car and killed twenty feet away from me, when I was about five. So now, whenever I can save an animal life, I will. Even a fly – and I despise flies. Even more, I despise their children. But back to the story at hand. In 2018 on a cold February morning, I encountered the following:

Autumn · Fall · Forests · I love trees · Nature · Oak trees · Trees · Uncategorized · Willow oak trees

William, the Majestic Oak

September 17, 2023September 17, 2023 Amy2 Comments

There’s something about me you should know: I love trees. I believe the science that states trees communicate with each other through lengthy and entwined root systems deep underground, as well as through their branches and leaf canopies. Dying trees are fed sugar through their roots from other trees that know of their suffering. The forest is friendship and family.

But William, the towering Willow Oak adjacent to my home, does not live in a forest. Perhaps he started out in one, a hundred years ago, when he was a sapling – and before that, an acorn. But there’s no way to prove it.

As he is now, overseer of my home and its relatively small parcel of land, William has a few local friends. None are larger than he, but they are seemingly not intimated.

Oak trees are formidable, and they live long lives. William is an example of this – and yes, that’s his name, we have conferred. He asked for my name, of course. “It’s Amy,” I said.

Given his proximity to my dining room, health and sturdiness are important factors to know about William. “Great tree.” “Over one hundred years old. I’d love a tree like that on my property.” “Perfectly healthy.” Several tree specialists have said these exact words about my William. I imagine Wills puffing up and shaking his leaves in a show of bravado, but his leaves are eighty feet up and I can’t see what he’s doing with them.

And yes, I’ve decided William is a male. I’ve heard trees can be either/or, and William gives towering male protective vibes. He is over one hundred years old, after all. He’s a galant gentleman.

His trunk must measure fifteen to twenty feet in diameter (see photo above for William compared to the size of my foot). His visible root system grows just touching my house’s foundation – but before you become nervous about that, it just touches. The roots follow the line of the home in a parallel fashion, abutting, but never crossing. His well-established, strong roots running along the foundation of my home appears to be giving it a gentle but Herculean hug. He offers roots for when I feel rootless and ungrounded.

His rough bark reminds me that he is rough on the outside, but alive and doing important tree stuff on the inside. His green leaves of spring are a canopy of hope external (remembering that hope springs eternal), his brown leaves of fall are a yearly consternation to my home’s gutters, and are my shoes’ main nemesis. My welcome mat ignores the leaves completely, unfortunately. His acorns drop from up high, clanking the glass patio table. The acorns are large this year, which my mother always predicted meant a cold, snowy winter. We shall see. The squirrels have already begun to bury the acorns, and, if they remember the locations of burial, they will be well fed this winter.

When the invasive pest English Ivy threatened William’s trunk, I cut it away, furious. When it grew back and multiplied, I had it professionally removed. William seems pleased. He can show off his trunk again.

“It would take two hundred mile per hour winds to take down that tree,” a landscaper recently told me, staring up at William in awe. (He was the person who freed William of the ivy.) Fingers and limbs crossed that never happens. William is well-protected by my home in a sort of symbiotic relationship.

I woke this morning to see William in his usual place, with the sound of acorns dropping now and again. He seems peaceful and ready to get on with the cooler fall weather. He’s already preparing for spring. After visiting William, my mind and then my feet trailed to my front yard, where my surprise Eastern Redbud grows. Her name is Clementine, and she has a magnificent story to tell.