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 · poetry · Writing

The Lion

Featured Amy13 Comments

I met a lion once

Male lions are majestic, but still just big cats

He wasn’t my lion, you can’t keep a lion

(You also can’t keep a lyin’, but I digress)

I knew him as much as you can know a lion

Lions are wild animals

You should never let your guard down

But one time I forgot

The lion scratched me

It was an accident

You know, like when your house cat accidentally scratches you when you play?

That, but a lion’s claws are so much bigger

In time it would heal,

But the scar would remain

No one can see it

But I should’ve known better

Than to pet a lion’s mane

blog · Eastern Redbud tree · Fall · I love trees · Photography · poems · poetry · prose · Trees · Writing

One Last Time

Featured Amy8 Comments

Thank you for the gift

Of two more blooms

Off-season

Much too soon

But also too late

Much too late

From dead bark

Arises life

One last time

ERJ, my eastern redbud that I’ve written about multiple times on my blog, has been slowly dying all summer and now into the fall. Strangely, he had the most beautiful blooms this year he’s ever had. This past spring, I mean. He’s got borers. They did their damage. I tried everything, but I couldn’t save him. I knew I wouldn’t be able to, but I tried anyway. The loss of this tree really hurts. Some parts of his branches are still pliable, but most are brittle. The bark now splitting from lack of life. But I noticed today a bright spot of pink. And then another. Arising from the broken, cracked bark and perched alongside seedpods as brittle as dead leaves, ERJ blooms one last time.

blog · butterfly · Grief · Love · Monarch butterfly · Nature · Nature photography · poetry · prose · Writing

Regina I

Featured Amy17 Comments

Butterflies don’t have norireceptors

They can’t feel pain

At least that’s what they say

They also don’t recognize human voices

Well, that’s what they say

I’ve only seen three this year

The most royal of all of the butterflies

I’m a finder of lost things and valuables that belong to others

And animals that are lost or hurt

I found her struggling on the sidewalk

I halted my walk in more ways than one

Scooped her up in my hands, and she desperately tried to fly

She had no visible injuries

Not to my eyes

I took her to my neighbor’s where I thought she might find some blooms

I offered her water from my tiny bottle cap

She did lap it up and for a moment, and I thought that was that

But she still could not fly

Even though she desperately tried

So I brought her home in a shoebox with some flowers

But that’s not the part I really want to talk about

I want to tell you how she recognized my voice and how her antennae responded when I talked to her kindly

I want to tell you she was perfect with not a spot on her to explain why she was dying

I pet her little body and talked to her sweetly

I told her she was beautiful, and although she couldn’t get to her destination

She would stay here with me

I hoped for a miracle overnight, but I knew better

At first light, I checked her shoe box and she was nearly dead, so weak she was, ants were crawling on her

I brought her in the house and showed her all the plants

I told her I loved her and would take care of her

I put her in a plastic bag and placed it in the freezer

(This is how to humanely euthanize butterflies when they are already dying)

I took her out twenty four hours later and laid her on the table. She looked the same, but her body wasn’t contorted anymore. Her antenna relaxed to a normal position rather than contracted in a sort of grimace

They say butterflies don’t feel pain. I don’t believe them.

I want to know why a beautiful, gentle creature meant to migrate thousands of miles only flew a few feet before starting to die

And other malevolent beings are granted the gift of a lengthy, destructive life

I want to know why

blogging · daily prompt · Humor · Writing

At Least It’s Not “Loose”

July 22, 2025August 8, 2025 Amy11 Comments

Which activities make you lose track of time?

One of my biggest pet peeves is seeing the word “loose” used incorrectly to mean “lose.” I cry in Proper Grammar when I see this on social media. It makes me sad. It makes me want to pick up my red pen and start editing. Yes, I am the Grammar Police, and if I catch you, you will not get loose, but you will definitely lose!

blogging · daily prompt · music · Writing

Silence

July 21, 2025July 26, 2025 Amy7 Comments

What do you listen to while you work?

My job asks a lot of me and my brain. For ten hours, I am essentially a computer analyzing data with some math computations thrown in. Music playing the background is a distraction, as is anyone talking. The birds are welcome to talk amongst themselves outside, and even yell at me for not putting out the peanuts quickly enough, but other than that? Silencio.

Yes, Disturbed covered this song, but I prefer the original.

Simon & Garfunkel – The Sounds Of Silence

Advice · animals · birthday gift · blogging · cats · daily prompt · Grief · Love · Writing

Discernment

July 12, 2025July 26, 2025 Amy18 Comments

What do you think gets better with age?

The ability to judge what is worth pondering or taking on. The insight and intuition to decide that something isn’t for you. The capability to decide that if something isn’t for you, you can leave it and go on about your day.

The wisdom to own your own shit and know that other peoples’ shit is not yours to own. To not give a fuck if people don’t like that you curse.

To determine it’s perfectly acceptable to water your plants wearing your bathrobe and your slippers. To go out in a very nice outfit, but not wear a stitch of makeup on your face. (This is closely related to wearing a bathrobe to water your plants.) Also, with age comes the knowledge and the understanding that what people see on the outside is not who you are on the inside. And who you are on the inside is much more important than what you look like.

My birthday is tomorrow. One more trip around the sun. Susie passed away in my lap this past Monday, and my best friend’s mother died about five hours later. It has been a difficult week, and I have scaled it alone, save for several good souls. And I have made it through. With age comes inner strength you didn’t know you had.

With age comes discernment. With age comes the knowledge that grief is love. You learn people can only ever treat you the way they feel about themselves. Sometimes you can do everything possible, but if you are misunderstood by others, it won’t make a difference. And you have to just let that shit go.

I have learned pets are a gift from above. Animals do not offer conditional love, theirs is only unconditional. They love simply because that’s what they do. For people who don’t know the love of a pet, or specifically a cat, I’m sorry. Your life has not been enriched in the way that mine has. Tiny humans grow up and they begin to place conditions on their love. It’s what the world does to us. But a pet never does. A 17-year-old cat still loves unconditionally, the same as when they were a tiny baby. My birthday wish is that humans may strive to be less conditional with their love, and be more like “animals.”

In honor of Susie, Happy Caturday, friends.

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 · book haul · books · daily prompt · poetry · prose · Writing

Just One Book

June 5, 2025July 26, 2025 Amy26 Comments

Do you remember your favorite book from childhood?

Are we talking about baby books that older adults read to you? Are we talking about the first book you read to yourself? Are we talking about the books you would buy at the Scholastic book fair? The fair they had every year in the trailer, and you would walk in and it would smell like new books and you knew this was your place? Or are we talking about books you read as an older child, the books that formed who you are and showed you other worlds can exist. And not only can you read them, you can write them.

I am sure they’re all in my memory somewhere, but they all exist as one.

Anniversary · birthday gift · blogging · Humor · Writing

My WordPressversay

June 4, 2025July 26, 2025 Amy16 Comments

Probably one or two of you know I had a previous blog which is not deleted, but is archived. WordPress informed me today I started that blog twelve years ago.

Nothing much came of that blog, but I created a new one, which is the one you see now. Still though, twelve years? Maybe a suitable gift from WordPress would be new daily prompts!?

Happy birthday, original blog. Thanks for being here, everyone. Let’s have some cake!