#it's not Chiari awareness month but in my life every day is Chiari awareness day so

[lightasthesun]

What is Chiari Malformation?

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A post shared by The Chiari Community (@chiarimalformation)

[soopertiddies]

On behalf of epilepsy awareness month I would like to tell a bit about myself, and also why I think it’s important to advocate for yourself!

TW: for surgical scars ahead

So for as long as I can remember I’ve had, for lack of a better word, neuro problems. I can’t remember a day where I haven’t had a migraine. It all kind of hit the fan in april of 2021. I had my dream job, but unfortunately that job was being a nurse in the middle of a pandemic.

I stopped at the gas station to get coffee, and I was feeling off (which I now know is a precursor to having a seizure). The cashier kept talking to me, and it was like my brain wasn’t registering what he was saying.

And then I had a seizure.

It’s important to note i’d had seizures for years, since childhood. Absent seizures, and episodes where id cry because I was agitated and my body felt like it needed to go every direction at once. My parents did everything the could to get me examined but the doctor always said it was anxiety (and non-epileptic seizures exist and are just as debilitating, but it was a misdiagnosis for me).

When I woke I was confused and scared, and I was told I had went into status epilepticus and it could have killed me.

status epilepticus is a seizure that lasts more than 5 minutes or more than 1 seizure in a five minute span.

THAT is how I got my diagnosis. I also was told there was fluid on my brain from a brain malformation called chiari. It was the cause of the migraines; i’d unknowingly had all my life.

Before I knew it, I had to go on medical leave from my dream job. I was on keppra and topiramate, and then keppra, topiramate and vimpat. And I was having brain surgery to fix a problem that had been present at birth.

It didn’t stop there because the surgery didn’t fix the migraines, and they are still present, as are the seizures (just a little easier to handle). I got very sick after the surgery and had to go to physical therapy to learn to walk correctly.

It felt like I went from a healthy 22 year old to very ill in a matter of months. I cried… A LOT.

My point to all of this is: YOU know your body better than anyone. It’s so important that you make healthcare providers listen to you. It’s unacceptable that I had these conditions, and didn’t find out until I almost died.

Listen to your body.

[padawansuggest]

IT IS SYRINGOMYELIA AWARENESS MONTH APPARENTLY!!! A few facts about the condition for those of you that wanna know:

I do not have Chiari Malformation (which is where the skull is too short to hold the brain so that’s why the syrinx forms) which is the main cause of syringomyelia in both humans and animals. I am in the very rare percentage of an already extremely rare condition.

This is a degenerative/progressive condition that is almost impossible to recover from.

It is caused when there is a fluid filled cyst inside your spinal cord. This pushes nerves out in all directions which causes nerve… it’s not quite damage, but it acts like damage. My nerves translate most forms of heat and warmth as painful, as well as causing extreme bowel and bladder pain that feels like ants in my bowels and a lead balloon in my bladder. It’s very painful.

I have this cyst/syrinx (the term syrinx is the term for a cyst in your spine itself) in the exact same spot that my brother had several tumors, except his were on the outside of his brain stem/spinal cord, and mine inside. This means that his was operable, while mine can only be operable under very specific circumstances. We both see the same neurologist and he is very intrigued about how both our conditions were formed in-womb and legit looked like he wanted to study us when I first met him lol.

The operable conditions are when I have a 100% chance of going paralyzed because the conditions is pushing on the right nerves and they stop reacting entirely. The reason that this is the operable condition to remove the syrinx (which isn’t so much removing it as… popping it… which also means it can grow back…) is because that surgery itself has a 50% chance of paralysis as well. So, 50% chance of keeping from being paralyzed vs a 100% chance of being paralyzed, means that in that case the surgery wins.

I take gabapentin 4 times a day, every six hours, 100mg for every hour of the day. Gabapentin is a nerve medication that peaks in usage around 2-4 hours in, and after 6 hours it starts to leave your system. Which is why I went from 8 hours for 800mg to 6 hours for 600mg. Because the meds always wore off before I could take the next dose and left me in pain again.

Because of my condition I have degenerative muscles. I have a million things to fight here (top of which are a chronic fatigue and allergies that both get me down plus IBS if I eat something wrong oooof) but because of my conditions I can never hold a job outside of the house. I can barely attempt one in the house too. Im working on starting my own work with my preferred craft and my father supports me (in both love and finances but we live together so it’s not hard) because that’s probably gonna be the only way I have my own income in life. I work with fiber, wool mostly, making and using yarn. Mostly making. Mixing the fibers together on expensive equipment that i waited so long to save up for. I have a lot invested in it. It’s one of my special interests too, so it’s really nice to have that as work. Dad is disabled with special interests too, so he gets it.

Because of all of this, I’m actually in a program slightly more… intense, than PT. My town is a college town and in the college (the gym of which is DIRECTLY across the street from my apartment I’m super lucky with that) we have a program called Wellness Elevated. This is where you get a full semester’s access to the gym for the college/public (which is separated from the gym across the building which is for sports kids so there’s no fighting over room it’s smarter) where they give you a personal student trainer in the sports fitness program. These students are training to tailor a routine to each person’s needs. This program got me from low mobility and constant backaches to mid-low mobility. I can function and even leave the house at least half my days now. I’m even hoping to just. Go outside. During this summer. Bring a backpack with emergency meds and stuff and go to the park and stuff.

Sometimes (and I know this is connected cause other people with syringomyelia say this too) I have off days where I drop things CONSTANTLY. Like, there’s this weird ass signal in my brain that keeps opening my nerves or something. It’s strange and none of us know why it happens, but we all agree it’s like our brain isn’t sending the right signals that day. It’s wild. The muscles and such are fine, the hand just keeps opening to drop things.

I’m asexual and consider my libido to sort of be an annoyance more than anything. I am on several pills that destroy sex drive and that shit’s godly. Just wreck it I’m done, I’m bored, I’m over it. My pills are not for those that actively like and want sex. I am on so many pills and every new pill I get further from the norm and I love it. I know others hate it but I’m delighted not to be there anymore.

I also have autism, OCD, anxiety (which I was informed that OCD is an anxiety disorder itself which means that’s a given, and not that anxiety is a biproduct of OCD. Other way around.), ADHD, mysophonia, pica, and a few other scattered issues. I give the therapists my list, and they give me concerned looks.

Um. Idk what else. I have syringomyelia and this is a bit of what it’s like to be me.

[oneman-wolfpackk]

i'm so sick of seeing little kids with chiari stuck in the hospital all the damn time, every damn day. it breaks my heart. i wish they didn't have to go through any of it. it's already a lot on me so imagine what it's like for a kid who's got way more complications? it's a disaster. i know being in the hospital is mentally and spiritually draining. sometimes it makes me go crazy and freak out. you do feel trapped in there. i'm sad that for so many sweet children, this is their reality. stuck in a freezing hospital room being poked and prodded like they're an experiment followed by dozens of painful procedures. it is a long and tough existence. i wish they could have a normal childhood and feel good. i wish they could have quality of life, but they don't and never will. and still, they are such brave warriors.

september is chiari awareness month by the way

[itsbeverly23]

For those that don't know I have Arnold Chiari Malformation type 1. September is our awareness month. Although I had my decompression surgery almost 3 years ago, I'm still affected by Chiari Malformation every day! Surgery is NOT a cure! It's more of a 'lets try to hold symptoms off for as long as possible". My current symptoms are no where near as bad as they were before my brain surgery, but at least I'm able to function in my daily life, most of the time. I really wish general practitioners, neurologists, and more neurosurgeons knew about this awful diagnosis. I and so many others have to do our own research and rely on other Chiarians to find out what is going on with us. My neurologist's receptionist is the one that made the call to tell me what was found on my MRI. She said the name wrong and when I asked what it was, she told me she didn't know and that I would have to do some research on my own. If it wasn't for the amazing support from fellow Chirians that I found in online support groups, I would have been so lost. If you have Chiari, think you might, or have a loved one with it, I'm here if you have questions or just need to talk/vent! #chiari #chiarimalformation #awareness #chiariawareness #chiarisurvivor #brainsurgerysurvivor #chiarian (at California) https://www.instagram.com/p/BnPxZjuhnGQ/?utm_source=ig_tumblr_share&igshid=hudpklp80ddv