1% chiari

𖹭 hoping to support others with chiari by sharing my experience 𖹭

[chiariokart]

what's CM1? [small skull meets imposing brain]

I have a condition called Chiari 1 Malformation, but to most people those words mean absolutely nothing. So what is it?

In the simplest terms, CM1 is when the lower part of the brain extends into the spinal canal. The condition is almost always congenital, meaning you're born with it. Symptoms, if you have them, often begin in in adolescence or early adulthood.

What is CM1 and it's Comorbidities?

What are the symptoms?

What are the types of Chiari Malformation?

Why does CM1 happen?

What are the treatment options?

Pronunciation Guide:

Chiari - [key-ar-ee] Cerebellum - [sara-bell-um] Cerebellar - [sara-bell-er] Foramen Magnum - [for-ay-men mag-num] Myelomeningocele - [my-low-men-in-juh-seel] Syringomyelia - [sr-in-go-my-eh-lee-uh] Hydrocephalus - [hi-drow-seh-fuh-luhs]

[chiariokart]

life after brain surgery

Hello my dear, deserted blog! I'm more than aware of my neglect of this blog, but I'm trying to think of it more as a collection of my experiences with Chiari, and less like a scheduled thought-dumping-ground. Unfortunately, brain surgery is not the craziest of things happening in my life at the moment, so please give me grace with my posting schedule.

Getting to the real reason you're reading this, I had my surgery almost two months ago! I won't get into the specifics in this post, but that will hopefully be showing up on this account very soon - crazy events willing.

Going into surgery, I was really disconnected from everything that was going on. Only able to focus on the current moment, and not how I'd handle the next steps. Surprisingly, it was a helpful way of coping.

Anesthesia felt like a deep sleep, and nothing else. There was no count down, just a push of medication and quick sleep. And when I woke up I felt mostly normal, and very tired.

During the surgery there was an unexpected complication, I think because the ventilation tube was leaking, but my chronically uncooperative lungs definitely didn't help. I had a severe laryngospasm and bronchospasm, which means I was having spasms that were greatly restricting my ability to breathe. I also had a partial lung collapse. Yikes!

I know that's probably scary sounding, but I didn't even realize the severity of the event until I read the reports on My-Chart, days later. And when I first woke up, I thought the CPAP machine on my face was a big overreaction, because I felt okay!

I had that CPAP machine for an hour or so after waking up, and had oxygen for the next day, but was still feeling so much better than I expected to.

From my understanding, my recovery was easier than it is for the majority of people. My pain was mostly low, and I was doing well without any strong pain medications. I was also able to get out of bed a few hours after surgery to use the bathroom. Not only was my family surprised, but the nurses and physician, too. Though I was very tired for the rest of the first day.

I want to stress that my experience is just my experience, and that this surgery can go many different ways, for better or for worse.

After four days in the hospital, I could go home! My inclined pillow and tray table were my best friends during this time. Maybe I'll make a list of things that were helpful during my recovery at home?

During my two-week post-op appointment, I got my stitches out and that was very easy. I noted that I had a minor chest pain when breathing, and my surgeon ordered a stat CT scan. I ended up having pneumonia, which was a little irritating. Thankfully, we caught it early and I only had the chest pain as a symptom. My lungs just refuse to act normally, I guess.

Now, two months out, I'm back to how I felt pre-surgery. Still having my regular symptoms, but I always knew any relief would be slow in arrival. I'm starting to regain full motion of my neck, and am not needing any routine pain medication!

Even though I still don't know if this procedure will help my symptoms, I'm so glad it was available to me. I was unwavering in my belief that it was the right step for me, regardless of it's effectiveness. And if this isn't enough, I will continue to work towards other avenues for relief.

My messages and anon are open to anyone who has questions regarding Chiari and decompression surgery!

[chiariokart]

why is this taking so long? it's only brain surgery...

It's been a ten weeks since my last post, and those ten weeks have felt like a waiting game.

I'd convinced myself that until I had meaningful post ideas, or updates on my medical journey, I had nothing useful to share.

With some chronic illness creators, it seems like they have this big team of doctors, and have many appointments with weekly progress. But the truth is: having a chronic illness can mean you're waiting on doctors for weeks.

I finally have a surgery date, and waiting for it to get scheduled was agonizing. Especially because I don't work, can't really leave the house, and am alone a great deal of the time...it feels like I'm watching life move past me.

I met my surgeon at the beginning of April, who ordered more tests. Those were done quickly, but then I had to wait until the end of May to see my surgeon again. I decided that I wanted to move forward with the surgery, and scheduling that took two more weeks.

And by hearing other's experiences, I've learned that's actually pretty fast for something like this.

All the while, I'm waiting for an operation that may or may not help. That uncertainty is scary, and I have a million more concerns about surgery everyday. Still, I'm unwavering in my belief that this is the right step for me.

So I'll just be waiting. Six more weeks until surgery.

[chiariokart]

self assessment: "permission to feel? denied!"

Yesterday I had my first appointment since being diagnosed with Chiari 1 Malformation. I won't be talking about the medical details today, but about what's been unfolding in my mind since the appointment.

At the appointment, my neurosurgeon told me that I'm a textbook case. He pointed out more symptoms than I even realized I had. He listened carefully to my history, and about the years I spent avoiding doctor's offices. He looked at my mom and remarked that she must be the voice of reason in all of this.

And that's where this realization stems from.

I've spent so much of my life downplaying my pain. As a kid, I learned that other people's feelings and opinions matter more than my own. So from mental health issues, to physical symptoms, I ignored every warning sign my body sent me.

Even after getting my diagnosis, seeing the huge syrinx in my spinal cord, and getting the news that I need brain surgery, I still can't convince myself that my pain is "bad enough" to be noticed.

Just like billions of others on this planet, I live with cognitive distortions. You probably do, too.

You start to think that your pain isn't justifiable until someone tells you that it is. You don't rest until someone gives you permission to. You convince yourself that speaking up is dramatic, attention-seeking, or selfish.

But please truly listen when I say that you do not need that permission; you never did.

After my medical burnout in 2022, I nearly didn't go back to the doctor. In January, I almost gave up when finding a new primary care physician felt too hard. I would have preferred to destroy my body by "pushing through the pain," than speak up for myself.

And if I hadn't spoken up, I would be facing much worse consequences than I am right now.

I know this, and yet I find myself still ignoring my body's warning signals. I've had labored breathing for days now, I can barely sleep, and every breath takes too much effort.

I still tell myself "it's not that bad." I'm still talking myself out of going to the ER, even after my neurologist told me to go if any of my symptoms worsen.

If you're reading this and you're ignoring your body's warnings, waiting for it to get "bad enough" before you reach out for help, please remind yourself:

You, yes you, deserve to take your symptoms seriously right now. You deserve rest, and care, and support. If you're holding out for "bad enough" it's never coming.

If you were also taught to ignore your body, I mean it when I say that it's not your fault. And you can learn to listen to it again. It's difficult. It takes time. But I've started the process, and I've seen improvement! It's scary, but that fear shows you that it's exactly where you need to start.

Pain is not weakness, it's information. You are not a burden, or "too much" for feeling or expressing your pain. Let yourself take up space, ask for help.

I could easily blame myself for not knowing what I'm starting to learn now. I could beat myself up for not catching this sooner, for not preventing the progression of my condition. Or - I can give myself grace for trying to protect myself in the only way I knew how.

They say admitting it is the first step. I think admitting it is the first hundred steps. I've come to this realization over and over. I think I will have to pick up on every single miniscule way that cognitive distortions sneak their way into my life.

It's not one big a-ha moment, it's hundreds of little ones.

Edited to add: after this post I lost even more of my breathing ability, and ended up going to the ER. They admitted me to the hospital and said my condition would've gotten worse if I hadn't come in. Please, don't delay your care.

[chiariokart]

plot twist: my brain has ˗ˏˋevacuated´ˎ˗ itself from my skull

To put it extremely simply, part of my brain is protruding out of my skull, and into my neck.

Hi! My name is chiariokart, and two weeks ago I was diagnosed with Chiari 1 Malformation. CM1 is a congenital neurological condition, where part of the cerebellum extends through the base of the skull, and into the spinal canal.

We just found out about it, but I've had it since birth.

In the first few days after my diagnosis, I was completely preoccupied with worry. I had actually suspected Chiari for months, but getting the diagnosis was still a massive shock. Maybe I'll write more about that another time.

Anyways, after the initial first days of disbelief, I started diving into medical lectures and statistics. While there's a good amount of technical-sciencey info on the internet, I was equally interested in finding personal stories from others with Chiari.

Current statistics show that 68% of people with CM1 experience minor or no symptoms. For those who do have symptoms, they vary greatly from person to person. In my case, Chiari has caused large fluid-filled cysts to form in my spinal cord, contributing to my debilitating symptoms. It's been hard to find stories from others with a similar experience.

But then! I found a blog from a woman around my age, with a similar presentation to mine. She's already had decompression surgery, and has documented her recovery process so far. She shares resources, tips, and so much info about what helped her during her recovery.

Finding her blog was such a relief. It felt like most cases I'd read about online were either more mild, or more severe than mine. Reading her story was invaluable to me, I have some semblance of what could be ahead of me.

Even if my journey ends up being nothing like hers, pretending like I know what lies ahead has been keeping me sane.

As I go through all of these new medical experiences, and hopefully find the best treatment option for me, I want to document it all here. I want to give someone that same sense of security, knowing that life with Chiari might not be as scary as it seems.

I have so many plans for this blog, and not just about Chiari. My doctors and I are pretty convinced I have POTS. So, I want to share my experiences with testing: Tilt Table, MRIs, QSART. I have a million ideas. I can't wait to share and learn so much with this blog!