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#chiari
dumbestdogalive · 8 months
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I have very little reach on tumblr but figured I would cross post here: last year I had surgery for tethered cord syndrome, and during treatment it was confirmed that I also have a chiari malformation. We've been monitoring it but i've shown concerning decline in the past 8 weeks- dizziness, loss of sensation in fingers, neuropathy, speech/vision/hearing issues, balance, falling and more- and my neurosurgery team needs to operate on me right now.
it comes as a very sudden shock, I thought i would have been able to hang in there until 2024 so we could plan financially and I could qualify for paid leave, but it's a very urgent priority and treatment can't be delayed any longer. i'm scared and nervous but relieved this will all be over soon! with the support of the community in fundraising i can recover comfortably from a scary, physically and emotionally exhausting time
pls share 🤍 thank you very much!!
link.tr.ee/chernobylstray
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maddisandy · 7 months
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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)
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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.)
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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!
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thecorvidforest · 9 months
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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
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ragazzoarcano · 2 years
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“I sentimenti come la delusione, l’imbarazzo, l’irritazione, il risentimento, la rabbia, la gelosia e la paura, invece di essere cattive notizie, sono in realtà momenti molto chiari che ci insegnano dove è che ci stiamo tenendo tutto dentro.”
— Pema Chodron
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twosidedsol · 1 year
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You know those relaxation techniques that are like “close your eyes and pay attention to your toes/legs/arms and consciously relax them.”
Sometimes I hate them.
A person with chronic pain does that and is suddenly hyper aware of the pain in their body that their brain has put on the back burners so that they can continue to function.
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oliveasaltylife · 3 months
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Well, it’s finally happening. My parents are withdrawing a portion of my monthly financial support. My husband has been out of work since early October and he finally found a job, but isn’t able to start until January.
We desperately need help to be able to make rent, pay utilities, and get food on the table on top of other monthly bills that can not go unpaid. I have spent the past 2 years begging my parents for the help they explicitly promised me when they found out my FIL gave me COVID in January 2022. I never recovered and still have a whole host of other complex health conditions that was significantly exacerbated. I still don’t have a definitive answer whether or not Long COVID is part of it because it reactivated a latent Bartonella infection that I got who knows how long ago. Not to mention the connective tissue disorder, dysautonomia, MCAS, chiari, and tethered cord I was already dealing with pre-infection, just undiagnosed and not taken seriously. My parents offered to help me financially because I had to stop working. I went back to work after my infection cleared, even though I know I wasn’t fully recovered, and relapsed very hard in May of 2022. That was when the full financial assistance from my parents really began, and they continued to try to convince me they would never turn down helping me.
For the next 6 months my mother berated me and made it known that she resents me because she wasn’t able to get “her pool” installed in the summer of 2022 because she had to help me, her eldest daughter. At one point she made me choose between my health and wellbeing or my sister’s (she is also disabled, but lives at home, and receives SSDI, which I do not qualify for). She ate her words that time. But they’ve been trying to get out of helping me ever since they offered. And now, my parents have taken it upon themselves to lower my financial assistance after my husband lost his job, and without even consulting me. They texted my husband, never made contact with me, and when I called them out on it made excuses that I don’t talk to them often enough. (Huh, imagine that. I don’t really want to contact my abusive parents, but it sure does highlight some of the abuse that’s gone on my entire life). I am not in a position to be able to turn down what they are giving me, though I can not wait until the day I can officially become no contact.
I need help. I’m exhausted from trying to fight for assistance I was promised by my own parents in addition to the extreme exhaustion that comes with living with complex chronic illness. I don’t know what to do at this point. I’m going to leave my Venmo link in hopes that maybe some of you are in a position that allows you to give assistance. If you are not able to, please share this. I don’t have a platform on any of my socials and really do not feel comfortable sharing it on Facebook where I have family members who also choose to ignore pleas for help.
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blueparzival · 10 months
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Hi y'all,
Hope everyone is doing okay in this hot weather(It's low 20°c in the UK)
Just wanted to post to let you all know what I've been dealing with lately.
Daily, I deal with ADHD, ASD, Depression, Anxiety, Chiari Malformation, Chronic pain and other neurological issues.😞😰🧠🧠
It's looking like I'm going to need to have Brain and Spine Surgery in the next couple of months.😷🤯💉🏥
During this time, I will have to take a leave of absence from work 😔
As such, Depending on what I can save up before then, I might struggle with Rent, Groceries, Utilities and other things during my recovery.
If possible, you can help out by buying one of my needed items for me or just generally help out via my wishlist on @WishTender.
Anything you can give is greatly appreciated.
Wishlist: https://www.wishtender.com/Blue2397
If you want to Chat, please DM me.
Thanks
(I'll update everyone when I hear more)
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sleepy-spoonie · 1 year
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The scene in Rizzoli & Isles s7e4 where Maura, being diagnosed with Chiari Malformation, has a flare of synonyms and blames it on not drinking enough water is SO RELATABLE as someone with Chiari Malformation, who drinks 96oz of water a day (on purpose) and blames all of her symptoms on "not drinking enough water".
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im still pissed about this despite it being a few months ago. but god i hate doctors because most of them never listen.
about two years ago i started having some intense migraines and lost a lot of weight. i had to go to the ER a few times to alleviate the symptoms that were causing me so much distress. i even went once for heart spasms but the doctors didn't think anything of it. i could literally see my heart beating and my chest was hurting so bad, but rhey labeled it as heart palpitations. i have those often, so i know the fucking difference.
i'd had health issues my entire life with no doctor ever finding the cause. it was supposedly all in my head. it was supposedly because of my (healthy) weight at the time. i have never been overweight, but i'm rather short so i stay under 100 lbs. it doesn't affect my health. that much i can say for sure. but doctors are convinced it's the cause of everything that's ever been wrong with me.
10 months ago i had a seizure. i have never had a seizure before. it was terrifying. when i went to the ER, i found out i have a condition called chiari malformation. all of my symptoms could be explained by this condition.
but what happened when i went to the neurologist? i was told i couldn't have symptoms (70% of people with chiari have symptoms). i was told i was "just skinny". i was questioned about my use of my medications. i was denied a follow up appointment.
to be honest, i'm tired of hearing that skinny people have it better. that everyone thinks doctors believe health problems will go away if you're skinny. it's just not true. no matter what your weight is, doctors will find a way to blame any and every health condition on it.
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silverior968 · 6 months
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Oh yeah, apparently september is the awareness month for Chiari. It's not very well understood, so if anyone has questions about what it's like, what decompression surgeries are like or how everyday life with it is I'd be happy to answer to the best of my abilities as someone with type 1 Chiari who's had decompression done.
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cozycoffeereads · 9 months
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As some of you know, I just spent 32 days in the hospital due to two invasive and risky brain surgeries. It’s disability pride month, and I’m going to try to post as much awareness as I can for someone recovering from such surgeries. I will also post disabled authors and literature about disability.
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Source for graphic: find your own hope
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thecorvidforest · 6 months
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i’m having a very strange symptom the last 4-5 days that i’ve never had before and i can’t think of anything with my conditions (H-EDS & chiari malformation) that would explain it. it feels like a constant coldness in the lower hip area of both my sides that feels like it’s caused by restricted blood flow. stretching and massaging have not helped at all. google is only giving me avascular necrosis, which doesn’t seem to match. i thought it might be a pinched blood vessel but i don’t know if that would cause it on both sides at the same time. does anyone have any idea what this might be?
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alwaysbeyondhope · 8 months
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woke up with Chiari head pain at an 8 which is not something I can work with. Got up, logged into work, told them I needed a sick day, logged off, took my meds, and took a muscle relaxer and an Ativan.
Hopefully this will knock me out so I can sleep through the worst of the pain.
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aslsuzyq · 1 year
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aspoonfullofsalt · 11 months
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When I was a kid, people were obsessed with asking me what I wanted to BE when I grew up. I’ve been thinking about this a lot lately and I’ve come to realize a few things: One: we place too much value on WHAT we want to be rather than WHO we want to become or what legacy we hope to leave behind. Two: I always felt like this question was a test - pass/fail. Are you aspiring to be something worthy or not? Three: I’m guilty of asking this same question to others, but I’m working on ending that. I don’t want to “be” something anymore. I don’t want to fit into an existing space. I want to become the role model my kids need (and the one I needed so badly but didn’t know it). I want to pave way for them to be who they are and not have society question their worthiness. I want to change the way we perceive disability and break the ableist establishment. I want to see an accessible future for everyone. #Disability #Inclusion #Accessibility #Ableism #EDS #MCAS #SpinaBifida #NeuroSpicy #OCD #BVD #POTS #Dysautonomia #Chiari #Accommodation https://www.instagram.com/p/CrpJQrdLe1v/?igshid=NGJjMDIxMWI=
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oliveasaltylife · 9 months
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I don’t know what I was expecting out of my neurosurgeon appointment today, but I certainly was not really prepared to hear “you absolutely have tethered cord AND Chiari,” and also “you’re a surgical candidate for TCS release”
I have been fighting for answers for years. Between my own research and literally drawing on my scans, no specialist (nor even my previous pcp) ever even believed I was having any of the issues I’ve been reporting, let alone *all* of them, and not receiving care fire. Surely I had to be receiving adequate care, or I was lying about the severity of what I’ve been trying to deal with.
Reader, I was still underreporting the amount of physical pain I’ve been in for years—partially because I’ve been told I’m “fine,” or “too young” my whole life and partially because I was already not being taken seriously.
In my exam today, my nuerosurgeon validated my years of lived experiences and my in depth research centered around finding my answers myself. She condemned previous doctors and specialists I’ve seen and the inadequate radiology reports. She drew on my imaging in the same way I did when I was trying to prove my need for specific specialists. She acknowledged my pain, and discomfort, and it was all very genuine, very unexpected, and very relieving.
I am so genuinely shocked, I don’t even know how to react. I could be having surgery as early as the middle of next month.
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