#Chiari Malformation

[ofdinosanddais1]

I'm always flabbergasted by boomers who like to med shame by being like "oh, wow, you're on so many pills and you're so young" like okay and??? You think a handful of pills daily is worse compared to the 24/7 migraines and chronic sleep problems??? This shit has restored my youth to me. I am doing things that child me couldn't have done. I WROTE 50K IN A NOVEL AND I'VE GOT ANOTHER SERIES PLANNED THAT'S AT 10K WORDS AND I STARTED LAST FUCKING WEEK.

Not everything with my illnesses is 100% gone with meds but Gods do you know how fucking amazing I feel compared to the last 23 fucking years OF MY LIFE???

You mean I can get a normal amount of sleep like everyone else and not feel like i'm surviving off a two hour nap and a corndog??? You mean I can socialize and have fun and shit without feeling like my brain is on fire??? You mean I can be more active and accommodate my other disabilities easier??? AND IT'S JUST AT THE COST OF TWO TINY FUCKING PILLS EVERY NIGHT??? (There's more with supplements due to me still healing from celiac disease but my point still stands). I really feel like I'm getting the better end of the deal here. One of the side effects is literally a huge fucking benefit for me so the only actual negative side effect I get is dry mouth and meanwhile I get my energy, peace, and existence back? And you're telling me that taking that medicine is a BAD THING???

If you are still wary about getting aids and accommodations to help you (hell *I* still am), then remember that a mobility aid or a medication or an accommodation is to help YOU. It's not to make abled people feel comfortable. It's for YOU. YOU deserve to feel comfortable. YOU deserve to have a good life. YOU deserve to enjoy life and anyone who says you shouldn't because it looks weird can take huge fucking log and shove it right up their ass.

[sleepy-spoonie]

tired of being in pain. tired of being nauseous from the pain. tired of flaring when I have stuff to do. tired of having a rare disease that doctors don't know how to treat. tired.

[skullhalo]

Happy disability pride month to people with brain malformations btw.

[lightasthesun]

happy purple ribbon month my dears!!

Cheers to all my fellow chiari warriors💜

[myownjadedpieceofmind]

I could use some help during the time I'm going through recovery from brain surgery. I know it's hard to just "donate" money to someone, but...perhaps if you bought a piece of jewelry, you'd be receiving something at the same time as you would be helping me pay my bills.

I have all of these, and more, on my website. I also have a whole bunch of stones, including uranium glass, that i would be happy to wrap up for you.

A gofundme has been set up, along with an Amazon wishlist including some of my favorite comfort foods.

I'm scared, but hopeful, that this surgery will make my life a little more livable. I need to make some accessibility modifications to the bathroom, but my goal is to make sure my bills are paid for the time I'm recovering from this surgery. It's going to be a while before I can get my hips replaced, but at least the pressure in my head will get better.

[sailor-cerise]

It's none of my employer's business what my medical issues are

But sometimes I just want to go

"My brain is literally squished into the top of my spine and the only real treatment is literal brain surgery where they cut a hole in my skull to relieve the pressure and sometimes that makes things worse because then the brain slumps down and that's also bad."

And see how they react.

[twisted-rat-king]

Got a head MRI to rule out neurological causes for chronic pain and uncovered a chiari type 1 malformation (cerebellum extends into the spinal canal)

i knew i was neurodivergent but damn

[senzasord]

POTS on an episode of House!!!

[maddisandy]

September is Chiari Malformation Awareness Month!

Hi yes hello! Since many people probably aren't aware of it, I wanted to bring attention to something we ourselves have called chairi malformation at the start of its awareness month! Its recognized with a purple ribbon usually with a zipper on it (for the zipper scars of those who've had Chiari surgery)

What is Chiari Malformation?

Chiari (key-arr-ee) Malformation is a brain malformation in which the brain is too large, skull is too small, or some combination on the both, causing the cerebellar tonsils (and in some instances the brain stem) to slip through the skull and into the spinal chord.

Chiari is most typically a congenital effect. There are two main types (though they aren't the only ones). The most common of the two us Chiari 1, in which only the cerebellar tonsils are descended through the skull. The second most common, Chiari 2 (also known as Arnold-Chiari malformation) has more tissue herniation in the cerebellar tonsils and even the cerebellum, as well as brain stem herniation as well.

(See Below, the Cerebellar tonsils are marked in red while the brainstem is marked in green and yellow. This is considered a normal MRI)

Chiari malformation is likely to occur in 1 in 1,000 people, making it uncommon but not rare. The statistics are likely to be slightly higher than that for Chiari 1, as many people don't present symptomatically (and many incidents are only found in cases where the person was receiving radiological imaging for other instances such as head injury, so many people are unaware they had Chiari to begin with).

The only way to diagnose Chiari is through radiological imaging (many arguing upright MRI specifically is the only proper way to view the real level pf herniation). Herniation is measured down from the McRae line to the lowest point on the cerebellar tonsils. Depending on the accuracy of the machine (and which imaging tool is used) herniation can appear at different levels at different times. (See below, my first MRI looks markedly less in comparison to my second MRI, which features a roughly drawn on McRae line. In the second image I was noted to have a 7-8mm herniation.)

Symptoms

Chiari is marked by a number of symptoms and commorbidities, even moreso depending on the type you have. Symptoms can occur at any level of herniation. Some people with Chiari can have a 3mm descent and have debilitating symptoms, while some may have a 15 mm descent and be completely asymptomatic. The most common of these is occipital headaches & migraines, ranging from mild to severe, but many more are possible. These range from...

Balance Issues

Dizziness & Vertigo

Neck & Shoulder Pain

Difficulty Swallowing

Sore Throat

Sleep Apnea

Nausea & Vomitting

Tinnitus & Hearing Loss

Blurred Vision, Visual Snow, & Vision Loss

Muscle Weakness

Numbness or Pins & Needles (Caused by Nerve Damage)

Poor Motor Skills

Fatigue

Cognitive Difficulties (including but not limited to Brain Fog, Memory Problems, Confusion, & Difficulty Speaking)

Insomnia

Photophobia/Light Sensitivity

Syncope, Fainting, & Drop Attacks

Seizures

Dysautonomia

Since the cerebellar tonsils block the opening to the base of the skull, Chiari can halt the proper flow of CSF (Cerebral Spinal Fluid) between the brain and the spinal chord. Because of this, Syringomylia (cysts filled with CSF formed on the spine called Syrinxs) is considered common with Chiari. Other common disorders with Chiari are Scoliosis, EDS & Cervicocranial Instability, POTS, Tethered Spinal Chord Syndrome, Spina bifida, & Hydrocephalus.

So What's the Solution?

Well, the only known solution for Chiari as of right now is surgery. This surgery is called posterior fossa decompression-- in which a small portion of the base of the skull is removed from the Chiari patient to relieve pressure and give more room for the brain. The surgeon can then do for sone patients a duraplasty, in which the dura (or opening of the brain) is cut open and a patch of tissue is sewed into the incision to make the dura bigger and give even more room for the brain. Surgery can also be done as a preventative measure against syrinxes for those without them. In the case the patient also has a syrinx, more surgical procedure can be done to drain the cyst. In patients with EDS, special procedures must be made to avoid surgical complications and making things worse.

Surgery is not guaranteed to completely alleviate symptoms, but typically helps with some. However, due to large misunderstanding and disagreement on proper diagnostic traits of Chiari from doctors (most typically neurologists and neurosurgeons) many may be denied surgery for a number of years, and Chiari Diagnosis can take on an average of 4 years to officially receive.

Some go years experiencing symptoms and having "low lying cerebellar tonsils" (or similar language, such as incidental tonsillar ectopia) noted on their radiology reports without doctors officially recognizing it as Chiari. In this time many are misdiagnosed with other disorders such as chronic headaches, multiple sclerosis, fibromyalgia, and more before finally finding a doctor who will listen. Many will brush off the radiological findings as just a difference in your brain being formed at birth before admitting the symptoms can be due to Chiari. It can take years of your own patient advocacy before someone finally listens.

This is why awareness to it is so important, in hopes of reaching other people and doctors and forming a stronger understanding of the condition from information found by experts on it and those with Chiari themselves. With more awareness comes more accessibility to treatment and surgery so those who are symptomatic can hopefully find some relief. So this month send a little love & luck to those with Chiari!

[connormurphyirl]

sometimes I forget my brain is literally falling out of my head and other times I can feel it.

[jmflowers]

THIS PATIENT ON GREY’S ANATOMY HAS THE CONDITION THAT I HAVE!!!!

[im-not-like-other-catgirls]

me when my disabilities are disabling

[sleepy-spoonie]

I was told this week by my rheumatologist that I have "fibromyalgia by elimination".

I PROMISE I'm not shitting on fibromyalgia being a diagnosis, but I've had unexplainable chronic pain since I was 5 years old (I also have chiari malformation, so maybe not totally unexplainable) and you're gonna tell me it's just fibromyalgia? Was I just born with chronic pain?

I'm angry about it. I feel like I try so hard, and my doctors don't try at all. And I know I should accept this diagnosis and be happy that they're even giving me a name to slap on my pain, but I'm just so very angry.

[lightasthesun]

pain aside I think the worst thing about it all is how incredibly stupid and incompetent I must seem to the people around me irl and because I am so forgetful that it severely impacts everything I do. If I'm out somewhere while getting an important phone call and don't have my little booklet with me where I've written everything down I'm...useless. I don't fucking know what's going on. I pretend to recognise who is calling me and run through possible issues or scenarios they could be connected to and if I'm lucky I somehow figure out what's going on and if not I have to ask them to call me back or tell them I will reach out again because I am 'busy' rn. Fact is that I am very rarely busy but I am overwhelmed and afraid of messing something up I can't recall being important in any way and so I bail.

Of course I could tell them I don't recall why they're calling me and why but that's embarrassing and most of the time the people get offended and snap at me or I can just hear the degrading tone in their voice.

And my friends too! I'm sorry I'm so forgetful. I try my best. I make notes and I've got a calendar and I set alarms and everything but thing is!! Sometimes I forget to do that! Or my phone or some app makes an update while I'm out and then I realise something changed but idk what and it makes me seem so incredibly unreliable and uncaring and I swear I'm not. I'm really really not.

I just can't remember. I'm not unreliable. I'm not stupid... I'm not.

[myownjadedpieceofmind]

Brain surgery.

Yup. 30 days from today.

[thecorvidforest]

this disability pride month please consider supporting me! i’m a physically disabled trans person currently trying to fundraise to get smart crutches as well as pay rent and take care of myself and my cat. i’m currently out of a job and need funds urgently. boost if you can’t donate!

paypal and venmo: @ synesomniac

gofundme: https://gofund.me/556cea4b