#chiari type 1 malformation

[hotchocolateandpillowforts]

Time for another MRI.

[myaudiocommentary]

[ren-is-confused]

Just got diagnosed with Brain Too Big disease, send condolences

[fibro-faerie]

Hey y’all!

I wanted to start a little support group for us spoonies— the Chronic Annoyance Gang.

Come join me to vent about all things chronically annoying 🤣

[lightandarkcomealive]

My arm feels numb and all I’m doing is just sitting here w a knot in my shoulder. My brain is so broken and for what

[tributes-vamps-and-ginnyweasley]

There's just something extra about being able to leave doctors speechless and prove them wrong when you're barely an adult

[dissociacrip]

Is it ok to use a cane if your gait/balance issues are caused by a neurodivergence? I have to take antipsychotics and I have a lot of balance problems because of them, and I have a scissors gait, but since it’s technically a neurodivergence would it be ok to use a cane? I think it would have help to hold on to something because I do better when I have railings or walls to hold, but I don’t want to appropriate when I’m neurodivergent. I also have a mild chronic illness if that matters

1. if you feel like a cane would help you then i encourage you to go ahead and use one. it shouldn't matter what conditions you may or may not have or even if you see yourself as able-bodied. the only people who you might encounter that are interested in policing who can and can't use a cane are those serving the interests of ableist ideas about disability and mobility aid usage. if able-bodied people treat mobility aids like they're just fun accessories or something (not including canes that are literally made to be accessories instead of aids bc that's been a thing since forever) then yeah that's kinda nasty but "i have this issue where a cane might help me" isn't doing that.

2. not all forms of neurodivergence are (purely) psychiatric or other mental conditions. chiari malformations, brain diseases, chronic symptoms of neurotrauma, etc. are also forms of neurodivergence and those conditions are considered physical in nature. so "caused by a neurodivergence" ignores that because i think the implication there is that "neurodivergent" means "not physical condition." that's just me being nitpicky about terminology though.

tl;dr - yes, please use a cane if you feel it would improve your quality of life and especially if it's to help you walk more safely. you don't need anything more than that to be "justified" in using a mobility aid. i don't think they really something you can "appropriate," especially if you're going into it with the mindset of "i have a chronic gait problem and i want more support." canes aren't in short supply or anything and they're relatively inexpensive. you are experiencing chronic mobility impairment. it does not really matter what the origin is.

if you haven't looked into it already, i would recommend researching what types of grip and bases would be most helpful to you and your specific issues + whether you need one that's foldable and adjustable or one that can't be folded/adjusted but is overall sturdier.

best of luck!

[ozarkthedog]

☀️Personal post☀️

so I finally found out why I’ve been having issues with writing and being creative in general. I was diagnosed with a brain condition. Chiari Type 1 Malformation.

In short, my brain is to big. It’s pushing against my skull and down into my spinal canal. I’ve had the symptoms for most of my life but brushed them off as other things because I never knew about this malformation. Over the last few years I’ve been progressively getting worse and it makes sense now why I’be been struggling with writing. I’m still in shock. I’m going through the stages of grief. Every day is different but ultimately I’ll only be able to manage the symptoms, there is no 100% cure.

I’m unsure what the future will bring. It kills me not to be able to write my ideas and participate in general whoring in a timely fashion these days. It even affects my being able to enjoy reading. I’ll do my best to keep writing and interacting because I really do love it. I might just take way longer to post a new fic (more than I already do). 😆

[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

[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!

[silverior968]

So, you remember the 11km canoeing trip that I was really excited for?

Well, I canoed half of it.

I spent the first half of the day at a pride parade, which was very exhausting but also fun. I had no reason to think that I couldn't do the canoeing. For newer followers, I have type 1 Chiari Malformation and had a chiari decompression (a very invasive form of brain/skull surgery where they, among other things, took out a piece of my skull and replaced it with a cow's cardiovascular tissue. No I did not get to keep the piece of my skull) done a little over a year and a half ago. For the past year I've been doing very strenuous exercise with no issue, so I had no reason to think I couldn't do it. Before my brain surgery I loved kayaking, but hadn't been able to go in 2 years, so I jumped at the opportunity to go on a guided trip.

I was assigned a canoe partner and while canoeing gave us a little bit of trouble at the start, we got the hang of it and had a lot of fun. My muscles felt like I could easily make the return trip by the time we got to the 1.5 hour pause point. I went to change clothes and to eat something, and that's when my head started to hurt. And it kept hurting. At first I thought I would just power through, but when I realized I was stumbling while walking I knew if I did I'd need either an ambulance or a hearse at the end of it.

I finally found the rest of the group, and they all understood and agreed that it wouldn't be worth the risk. Still, I felt like I let everyone down, even though I know there's nothing I could've done to predict or prevent it. It was really crushing, because i had been so excited and this was the first time in around a year when the strain became too much.

I found some employees to wait with, they were very nice and offered to call me an ambulance, but I had already called my dad to pick me up and just didn't have the energy to go to the ER.

The scariest part was that the pain didn't let up. Not in my dad's car, not in the shower, not when I took painkillers. It seemed to be getting worse. Finally I fell asleep, and when I woke for the first time at 4am it had finally gone. I slept until 11am.

I'm still nursing the negative feelings from yesterday, but I'm still happy I went. I had a lot of fun on the first half, although now the sadness and disappointment of not being able to experience the trip back in the dark with all the lights are stronger than ever. But it will pass eventually.

[hotchocolateandpillowforts]

I had a virtual doctor’s appointment today which gives me just as much anxiety as an in person visit. Maybe more?? But because schedules were what they were for this week I could only do a virtual one. We discussed meds and renewed prescriptions. She wants me to get back on the tracking my migraine train (I stopped last year because I became my mom’s full time care giver for a while and then had like 6 months of burn out that made everything so fucking hard). And I get to do blood work and an MRI on Tuesday. I haven’t had an MRI since my original in September 2021 and the CINE one in October 2021. Doc also said that surgery is unlikely even if we see a worsening of my Chiari on the MRI since my symptoms are mild at this point. No one wants to cut into your head and remove pieces of bone unless it’s 100% unavoidable.

[neonstatic]

i got cramps and a tension headache (y'all what if i do have type 1 chiari malformation) and i feel like puking my guts out!!!!!

[iianetwork]

What is Chiari Malformation? Did you know that Chiari Malformation, or Arnold–Chiari malformation, is a condition where the brain sags into the spinal canal? This rare condition comes in three types, each with its own set of symptoms. People with Chiari Malformation may not experience symptoms, especially with Type 1. Chiari Malformation is diagnosed with Imaging such as an MRI or a CT scan. Complications of Chiari Malformation include: Hydrocephalus, an accumulation of excess fluid within the brain, Syringomyelia, a cavity or cyst (syrinx) that forms within the spinal column, and Tethered cord syndrome in which the spinal cord attaches to the spine and causes the spinal cord to stretch. People with Chiari Malformation Type 2 usually have a form of Spina Bifida called Myelomeningocele. If Chiari Malformation presents symptoms it can be treated with pain and headache medications, and if needed surgery. In the most common surgery, the surgeon removes a small section of bone in the back of the skull, relieving pressure by giving the brain more room. Sources: MayoClinic.Org and NINDS.NIH.Gov [Image Description: Purple background with a black title that reads "Chiari Malformation", below reads " Chiari malformation, a condition in which the brain sags into the spinal canal. There are three types of Chiari malformation: Type 1 symptoms: headaches, neck pain, dizziness, and difficulty swallowing. Type 2 is present at birth and has a greater amount of brain sagging. Type 2 symptoms include: changes in breathing pattern, swallowing problems, quick downward eye movements, and weakness in the arms. Type 3 is present at birth. It is the most severe and the rarest. A portion of the lower back part of the brain or the brainstem extends through an opening in the back of the skull. This type has a higher mortality rate and can cause neurological problems."] recLWqMKjnvshsQFL, recsjHN43osLwQsZp

[elsabarnitt]

SPECIALIST PRACTISE

First tutorial

Going into my first tutorial to discuss my first thoughts. I have whittled the briefs down to Mapping the World and The Spaces Between.

This tutorial was with Sally and Mireille, a visiting tutor who specialises in illustration.

These were the notes taken during my tutorial by Tom. They were taken by someone else so that I could fully be involved in the conversation about my work.

We mainly discussed the idea of my brain condition, and how it could fit into each brief. Whilst talking about my brain, there were other ideas passed around for other spaces within the body that could be interesting to explore such as the space of pregnancy. We were also discussing other forms I could present this in. A video got suggested to me by Mireille on YouTube, called Weird Type by Zach Lieberman. This is not the most mind-blowing video however that wasn’t Mireilles intentions. It was to show me that I didn’t necessarily have to create a book as my outcome. This video experiments with type within a space, and shows how it can interact with its surroundings. Depending on the idea I choose to run with this is definitely an avenue I am interested in.

https://m.youtube.com/watch?v=5hLiCTGsbeY

Morag Myerscough also got spoken about. She does amazing installations using typography.

AFTER TUTORIAL

I started looking into my brain condition more, the symptoms I experience and how they make me feel. During doing this as well as from the tutorial I decided that The Spaces Between was the best brief for this, as for me my brain feels more like a space than a map so I would like to represent it that way. I can also come at it from different angles. For example, technically the condition occupies the space between the skull and the spine.

Some of the symptoms I have experienced and still experience;

- neck pain

- numbness and tingling in hands and feet

- dizziness

- speech problems

- muscle weakness

- unsteadiness

https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Chiari-Malformation

“The prevalence in the general population has been estimated at slightly less than one in 1000. The majority of these cases are asymptomatic. Chiari malformations are often detected coincidently among patients who have undergone diagnostic imaging for unrelated reasons”.

It is also quite common for people to live with Chiari and not know they have it. They could either just pass off the symptoms as something else, gotten used to them or just don’t experience any symptoms at all. You will only know if you have it if you go through an getting an MRI done.

I have type 1 Chiari Malformation which occurs during fetal development. So for me, due to the fact I have lived with these symptoms for a very long time I have a lot of coping mechanisms in place to prevent things from happening. For example; going for a shower and washing my hair can cause my brain extra stress from the heat as well as the upright position I am standing in. This can lead to me feeling very faint and nauseas. I have found throughout the years that as long as I eat before I have a hair wash then I will not experience these symptoms. In fact I only found out recently that this is probably a result of my Chiari. I learnt this by asking other people whether they too have to eat before hair washing and their answer was no.

[verygreys]

King charles cavalier puppies near me

Occasionally, the presence of CM/SM is found as incidental findings while investigating another neurologic condition ( 11). Along with the CKCS breed, this condition has been reported in Pekingese dogs, Maltese terriers, miniature dachshunds, fox terriers, lhasa apsos, pomeranians, Yorkshire terriers, and a Samoyed dog ( 4, 8– 10). The incidence of CM in the CKCS breed is an estimated 95% and current studies suggest that SM is present in more than 50% of dogs with CM ( 7) with approximately 35% of affected dogs exhibiting clinical signs ( 2). Recent data suggest that CM in the Cavalier King Charles spaniel (CKCS) is inherited ( 3, 7). Other documented etiologies causing SM in the dog include spinal trauma ( 4) and neoplasia in the region of the brainstem or foramen magnum ( 5, 6). This malformation of the caudal fossa is known as a Chiari-like malformation (CM), a condition that appears similar to Chiari type I malformation in humans. A cause of SM in veterinary medicine is a reduced volume of the caudal fossa secondary to an inappropriately small occipital bone ( 2, 3). Although the exact etiology and pathogenesis are unknown, SM is thought to develop secondary to an obstruction of cerebrospinal fluid (CSF) flow at the level of the foramen magnum ( 2). We'd also like to hear from you! You can write a message to us using the form on the left hand side of this page.Syringomyelia (SM) is defined as a condition that results in the development of fluid-containing cavities within the parenchyma of the spinal cord as a consequence of abnormal cerebrospinal fluid movement through the foramen magnum ( 1). Included in 'Michelle's Thoughts', I've added a link to a page that all dog lovers should read-also, please watch the video! It's terrible, heart breaking stuff but only YOU can educate others!! > Thinking about buying a puppy from a pet store? Read this first.Our goal is to make your entire experience with us as special as possible and we look forward to the big day when you come to our home in central New York to meet us and your new puppy! A special thanks to those very special people who decided to make one of our very beautiful puppies your own. Thank you to everyone who contacted us, wrote a comment in our guestbook and enjoyed the videos of our puppies. Our animal family also consists of 1 Border Collie, 5 Great Pyrenees, 5 Horses, 1 Pony, several Cows, lots of Ducks and chickens. Only a healthy well rounded parent can give birth to healthy babies. Our dogs and puppies are very well socialized and healthy inside and out. We breed for quality and conformation. We've also selected our adult dogs from healthy, well conformed Cavalier breed 'standard' parents. Come and meet our Cavy's, learn more about the breed and much more. Mid Lake Cavaliers is located in central New York where all of our adults and puppies are raised as part of our family. See our future litter section for pre-birth deposit availability.Welcome to Mid Lake Cavaliers Located in Marathon, NYĢ Blenheim male puppies Available see Available Puppies