My Brain Fell Out Of My Skull | BORN DIFFERENT

[@Emily3Sarah]

Hey! This is me :) thank you for all the lovely comments x

[@BHALT0S]

hope yer recovery is going well and you are on the permanent road to full recovery, must admit... when I saw the title, there was some panic in my thoughts. All the best in this life pal, there's plenty out there to see and do.

[@ValpCreates]

Wishing you the best no matter the outcome!

[@Quirisha]

All the best for your future hopefully without much pain. You are an incredible and beautiful person who deserves to live and enjoy life to its fullest. Love from germany ❤

[@Davis_the_dude]

How u doing now?

[@eggygeorge]

I’ve just just my first decompression for this x

[@BMCLegacy]

Where do people get of calling people with chronic diseases liars? I truly pray they reap what they sow. I have 7 chronic diseases. We aren't faking excruciating pain. Poor girl. Please fight. I'm fighting too. And to anyone suffering like me. I see you. I believe you. And I need you. Keep fighting

[@nikkijooste-strombeck5045]

I know right? People can be so cruel. I have Fibromyalgia and Degenerative Disc Disease with permanent nerve damage in my spine but because I still do things and only need the wheelchair on some occasions. But when I go out and I have to use didabled parking because I can't walk for long, I feel like I have to prove to people that I really need to park there.

[@spulwasser]

Especially your "friends", they should give you the benefit of the doubt!

[@shottwice]

It’s because people fake diseases for clout. It’s happened so much that some people simply don’t know what to believe anymore. (Not saying she’s faking im saying why people jump to the skeptical conclusion first).

[@jenncummings6721]

@BMCLegacy I’m sorry that you’ve had to live with a chronic illness and live in pain. You’ll definitely be in my prayers. I have a chronic illness as well. I was born with Sickle Cell Anemia and I’ve suffered with it my entire life. Living with excruciating pain, spending most of my life in hospitals for months at a time and I was told I wouldn’t live past the age of 21. I’m now 38 and still live in pain everyday but I’m just grateful to be alive. I’ve never understood either how people could question others about their chronic illnesses. It’s extremely disrespectful and irritating and I hope they reap what they sow as well. I wish I could give people a day with the kind pain that we live with just so they can see that it’s nothing to play around about.

[@jenncummings6721]

⁠​⁠@@nikkijooste-strombeck5045 I’m praying for you as well. Stay strong. I know exactly how you feel using the disabled parking and feeling like you have to prove that you have to park on those spaces. I’ve had people tell me that I shouldn’t be parking in a handicap space because “I don’t look sick”. 🤯 Not all illnesses are visible and we don’t have to prove anything to anyone nor do we owe anyone an explanation for anything.

[@Ambi1021]

Thank God her father advocated for her and refused to leave before finding the cause of her pain.

[@YochevedDesigns]

Dad is an absolute HERO!

[@LocalDr.Pepperlover]

He’s the goat

[@RosePostedThis]

Because women with chronic illness don't get taken seriously without a male advocate.

[@KC_DoesStuff]

@@RosePostedThis very true, I've seen very many examples of this and it really is extremely disrespectful and frustrating

[@Ash_NuggTato]

I keep having pain in my uterus area/lower abdomen but they keep saying they don't see anything and, and it burns when i pee sometimes but they always say the tests cones back negative, i have endometriosis but they somehow dont see anything anymore

[@neila128]

I feel sorry for her, but it must have been more difficult for her 'friends' and 'people' that accused her of faking her condition - it must be hard not having a brain at all.

[@lisababyg4754]

Most underrated comment EVER. That gave me a well deserved chuckle 🤣❤ thanks 4 that 😁👍

[@wrenbyrd1093]

😂😂😂😂😂

[@6_blocks_under]

exactly!

[@theyluv_tyra]

Ur not funny ​@@wrenbyrd1093

[@ChimozeChum]

Wdym? She still DOES have a brain! Is this supposed to be a joke or smth? I’m so confused

[@TheElwain]

Seeing the title come across my feed..... I thought no way. NO ONE talks about this. Cant be. No way. And yet here we are. someone talking about the thing I got, sharing their story. Darn nice to see.

[@rosavisser5764]

I thought the same way! What a world!

[@JuicyPeaches504]

Omg same! I saw the title and thought there's no way they're talking about chiari malformation! And they were! I'm 44 and was diagnosed in 2015. New Orleans area and haven't had any surgeries yet but because I'd have to do it at university hospital and I'm terrified of students to be cutting into my brain... Have y'all had surgery?

[@ALDC8]

It’s actually pretty common for NO ONE to talk about it even though we litterally have headaches more often than we clean our rooms

[@ocdmusic]

I have EDS & CM too, diagnosed 2013 had brain surgery in 2014. I was ucky it did help a bit, definitely don't think I'd be here without it. I had headaches since I was around 11, am 48 now. There really needs to be better understanding about it by medical staff.

[@bethanykey5662]

Same here, I feel seen and heard, I’m 6 months post surgery and am now back to feeling the same way again with all symptoms it’s relentless hoping healing and light to all those feeling the same way because of chiari

[@emmasalek]

my dad died from chiari in 2015, he was 42, i was 8. he dealt with it for his whole life. i’m happy the disease is getting more known and more stuff is being done about it but i wish i can get my dad back from the horrible disease. it took away my favorite person

[@daisym21]

sorry for your loss, you’re so strong ❤️

[@dwilson6769]

💔 I call my daughter my favorite person. Your reality shatters when they're gone because it's forever until you're called home. You should write a short about him. Keep his memory alive. I've never heard of this disease until today 11 Dec 24 and I'm a nurse.

[@Moonxstar-YT]

I am so sorry for ur dad, he lived a good life❤ May he rest in peace

[@emmasalek]

@ thank you so much

[@johannemercier1440]

So very sorry

[@alleshaxx1419]

As someone who has chiari malformation as well as many other conditions, i would not wish it upon anyone. As with many conditions, there are patients with no symptoms of chiari, whilst other patients have debilitating, excruciating symptoms that is life changing. This condition usually goes hand in hand with many other conditions, like scoliosis, degenerative disc disease, fibromyalgia, and so on. It can be a pain that can crush your biggest dreams, steal your faith, and it can impact every aspect of your life, like working, studying, having an active lifestyle, relationships with friends and family, this list does not end, and very commonly can it feel like a curse is upon you. The fact that Emily wakes up every day, suffering immediately upon waking, living her nightmare, but chooses to get up and fight any way, is remarkable, she is so strong, and her hopes to raise awareness to others with this condition is so thoughtful and inspiring. Emily, you have such a bright future ahead of you, no matter how hard it gets, never let go of that spark of hope to keep going because you have an amazing future ahead of you, i am positive of that. And to mum&dad of Emily, thankyou for being the most supportive parents Emily could ever ask for. I am glad to call Emily my friend, my chiari sister.

[@nikkijooste-strombeck5045]

I never realized it that it went hand in hand with those others. I have Degenerative Disc Disease and now permanent nerve damage in my spine due to a lower back surgery. I also have Fibromyalgia..I'm 53 now, I had my first spinal surgery when I was 24 in my neck and if I hadn't had it I could have been paralyzed from the neck down. I have a daughter of 25 with brain damage and she started having seizures at the age of 22.. after having her MRI for the seizures I found out that she has Chiari Malformation and Severe Syringomyelia. I was so shocked! Her neurologist said that because she's not showing any symptoms we should do nothing. But just the fact that she's had this since birth with numerous MRI scans due to her head growth as a baby and I was never told she had Chiari. She was born with hydrocephalus and megalenchepaly which is an oversized but under developed brain. Life is hard.

[@Emily3Sarah]

Thank you allesha, you’ve been here for me through it all. Love you xx

[@Raquel_98]

​@@Emily3SarahI hope you are feeling well now and that you don't get worse again 🤍. Best of luck, encouragement and love from Spain 😊

[@agusguti]

​@@nikkijooste-strombeck5045 hi! I would get a second opinion for her. Sometimes wait until symptoms get worst is not the best. Also, I have Chiari and as this other sister said, there are a ton of things that go hand in hand or I would said that are more prevalent if you have this disease. I started having seizures at 21 (I'm 34) and they wouldn't find anything in my eeg and my last neurosurgeon and eeg specialists told me it can be the Chiari and my neurologist diagnosed me with epilepsy last year. I also have other health issues, some probably related some not. Ehler danlos Syndrome, nerve damage, something in my lower back that I don't remember the name. PAIN of course... But I also become def in my left side at 15, and I already lost 80% of my hearing on the right side, I have tunnel vision. I'm in the autism spectrum. EVERYTHING was diagnosed as an adult nobody believed nothing before I had my first seizure wich happened in the hospital (I was already there because of my pain). My seizures most common triggers are pain and flashing lights. I had 2 chiari surgeries already and the pain is getting worst.

[@6_blocks_under]

@@Emily3Sarah so glad that you got the surgery and you're experiencing well deserved relief!

[@Everey-Paige]

I honestly can’t believe that people are accusing her of faking this illness! It’s serious and painful, I can’t imagine anyone I love having it myself. Poor girl, wishing you a speedy recovery ❤️‍🩹

[@YochevedDesigns]

Being sick and being pretty is a bad combination. If you "look good" then you must be "fine." This is especially true if you are young.

[@Jesavae]

The ones who didn’t believe her weren’t friends. It’s great that she had/has loving support

[@sirchadiusmaximusiii]

She has such a sweet soul in an evil world. I pray that her surgery helps her into a better life. 🙏

[@saraloeb1299]

🙏🙏

[@OgechukwuEzeana]

Amen 🙏

[@mrj-charles6383]

good thing you did not watch the video. It was a true tragedy in the end.

[@christycookey6500]

My heart breaks for her, living with this condition has got to be difficult & very frustrating, especially when others judge so harshly. I’m glad her surgery went well, And I hope she has a full recovery & this condition will not impact her any longer 🩷

[@mcneca1]

I am so grateful that my Chiari symptoms weren't so severe (and weren't typical) and that my surgery was successful. I have fibromyalgia, but I don't have the migraine-like headaches anymore. My heart goes out to those who suffer so much.

[@ALDC8]

Mine are like yours but I can’t have brown soda or some ice creams because they give me migraines

[@nessa007productions]

It’s so sad and infuriating that people will claim others are faking their illnesses/conditions. Just because you can’t “see” something doesn’t mean it’s not real. I wish Emily all best and hope she continues feeling better now that she’s had her surgery 💕

[@Sc-dd6hb]

At 6:50 she, sweetly, tries to explain her ex-friends’ reactions with “they don’t experience it so they don’t know”…but that is LITERALLY the definition of EMPATHY, being able to “feel” another person’s pain. I only hope it is extreme immaturity that explains their lack of empathy, because the only other explanation is psychopathy. Btw, even rats have been proven to show empathy and altruism towards their fellow rats (by refusing to shock another rat when doing so would get them a food reward. They would rather starve than hurt the other rat. )

[@hnichole]

It genuinely makes me so angry when people accuse others of lying about their chronic pain or other health conditions. While it's not the same thing, I was a very sickly child/teenager, like just constantly had some kind of virus or infection going on that lasted way longer than my peers. Even as an adult, I can be sick for a couple months at a time. I remember how, even on that small scale, I've had employers accuse or imply that I'm lying about being sick or not feeling well. And that's not anything in comparison to the kind of pain described here. It's so frustrating that people who are always healthy feel they can sit there and be so judgmental about something they have no understanding of.

[@pennymunt112]

I love your answer just because we are diagnosed with an invisible illness doesn't mean we're taking it.

[@incrediblesloth85]

My wife has this. The surgery helped a little, but some issues didn't go away just like this lady. This is an awful condition.

[@vickiwaatti1076]

I have CRPS - which is a chronic pain disorder. I have had people (Including family) tell me that I am faking and am just drug seeking or just lazy. It really sucks.

[@Emily3Sarah]

I’m sorry to hear that, that’s so unfair x

[@Jade-5713]

I’m so sorry to hear that, that’s awful 😔

[@StarbyterOddities]

My dear aunt has CRPS, and people assuming she's faking, and assuming negative things about her in general, has made me unfathomably angry since I was a child. People are so cruel, for no good reason

[@sharonwilliams1981]

I am getting the same thing. It's horrible when your own family think like that.

[@Rabellaka.]

My mother-in-law doesn’t understand the chronic pain I have from a poorly healed foot and ankle injury. (Thanks to covid closing medical offices) Some days it’s almost impossible to walk across a room. She thinks that I should be able to keep up with her because I’m younger. And we live very close, so I see her almost daily.

[@Bettinasisrg]

I've got spinal issues (no where near this) and just listening to her gave me a knot in my stomach. People have no idea what true chronic pain is like and just because someone looks "normal" doesn't mean they're not suffering. Please be kind, it's free and means more than you know. So happy she's doing better!

[@stephj4551]

I too have had my life upended from Chiari malformation. I’ve had the decompression surgery. I’m still experiencing many symptoms she describes in the video. My migraines started when I turned 30, I’m 57 now and still in a great deal of pain. Just keep trying and searching for the best care you can find. You have a right to that as a human being. God bless.

[@rachelhouston9343]

"But you don't look sick" is what is always said of people with invisible illnesses. Just because someone doesn't "look sick" doesn't mean they aren't in excruciating pain. I have Chiari and it took 4 years to be diagnosed. It progressed to where I couldn't talk without a horrible stutter and had trouble keeping my ballance when walked. I thankfully was pain/symptom free for 15 years after my surgery. I'm now having new pain and have to get 16 injections in my head every 12 weeks that helps me function. I'm getting ready for another surgery now because I have narrowing in my lumbar spine. I wish many spoons to all those with invisible illnesses. ❤

[@arnicepernice8656]

After have in 14 years of pain due to a brain haemorrhage I found out about the sunflower lanyard. This really helps so when my speech is slurred or whatever is happening to my health, I don’t get snide comments. Invisible illness is awful

[@jodylien853]

​@@arnicepernice8656what is the deal with the sunflower lanyard?

[@hannelerantanen760]

New Fear unlocked as I never knew this was a condition. She's so very brave. I wish her the best in life.

[@kenwyncorbitt6100]

Its something you are born with it has to do with the way the skull and spine form. You would have symptoms starting early in life.

[@RollingWithJess]

@@hannelerantanen760 no need to be worried its a genetic condition that develops from birth then gets worse as she gets older but most people arent diagnosed until later on in life because they don’t experience symptoms until teens usually

[@JuicyPeaches504]

​@@kenwyncorbitt6100 I didn't have symptoms till I was 35 years old. It's a shocking diagnosis to get.

[@hannelerantanen760]

Yeah I would worry immensely if this happened to me while pregnant with a child.

[@i.cant.sleep.anymore]

​@@kenwyncorbitt6100not always though, it can also happen from a CSF leak, so chiari can unfortunately be acquired as well.

[@unpopularopinions9076]

Invisible, chronic illnesses are so cruel. It’s so easy to dismiss the difficulty of living with illness everyday, all day. Congratulations on your successful surgery! Prayers that it continues to be curative! ♥️

[@ivealreadyleft]

nice to read this because it is such an alone feeling

[@Катнип]

Poor girl. Her father's face says it all. Heartbreaking

[@MALASHA1234]

What a great dad advocating for his daughter so she could get a proper diagnosis ❤

[@young_phoenix_12]

There's one good thing your condition has done for you, it got rid of the bad friends! Real friends stick with you through the toughest times! I am amazed at how someone could actually tell their friend they're faking their pain! That's unbelievable and I am sorry you had to go through that at such a young age. I am so happy that your surgery went well.

[@Emily3Sarah]

Thank you, you are so right ❤

[@CatCmdr]

As a (now retired) nurse, thank you for sharing these stories & your story. You are very brave. The brain stem is where we live, so to speak. You don’t have to experience a traffic accident or appendicitis to know it exists. God Bless you & your true Friend. ❤️

[@anabella4166]

I wish I had parents like this. Unfortunately I have parents who have ZERO sympathy for my chronic illness and tell me I need to suck it up.

[@Nwladylaura369]

I have a cousin with this condition. She is amazing just like this gal. I pray they can continue to get thr help they need! ❤

[@Poohtle]

The friends who didn’t believe her weren’t real friends. I’ve had the same from my chronic conditions. People think you look alright and can’t understand that you can’t make plans or if you do you often have to cancel at the last minute. I’m so glad her surgery has been successful.

[@maidahaltrecht6577]

Poor thing! Can't imagine what she has gone through. I truly hope the surgery continues to help her overcome the symptoms and that she never suffers again from this.

[@Rai_The_YinYang_Dragon]

She’s not a thing…

[@Tam-Solo70]

I have never heard of this and I am reading through these comments…..wow, this is crazy! What a horrendous experience. I love these parents advocating for their wonderful daughter. I pray for you to continue to be pain free! What a beautiful young lady. ❤

[@lilitheden748]

This is so recognisable. I have also a chronic condition that makes life not easy. I am not able to work anymore and as I get older things will not approve. I have been ill from my teenage years. At first it was just a bit of pain. Throughout the years it has gotten worse. My case is totally different from hers but there are some similarities too. Friends hook off when you aren’t available most of the time. People start talking and say that you are profiting from the social system. They say that you are faking your disease… It can be very hard and painful. I hope she gets better soon and I wish her a fabulous life full of joy and happiness. That’s what anyone deserves.

[@kb32872]

It's always good to get a second opinion when a doctor says nothing is wrong with you and you know there's something going on with your body. I have my own story. In 2017 I started slightly walking like I had a stroke at the time it wasn't noticeable and I couldn't fell it but my mom noticed my walk then I started dropping stuff out my hand and wasn't noticing it until I look down then my left started to get numb. I went to 3 doctors, and they ruled out a stroke and meningitis, and all 3 said they didn't see anything wrong with me. So I finally found a doctor who gave me an MRI, and it came back to my surprise it was a tumor the size of a grapefruit an inch from my brain sitting on my cervical spine. I had to have surgery 11 days later, and during my surgery, my neurosurgeon found another tumor growing under the big one. The big one was removed, but the smaller grew into my spine, and the doctor shaved as much as he could off. He didn't try to remove it all due to it might have caused me to be paralyzed. So I'm living with some tumor in my spine and got left side weakness. My neurosurgeon said if I didn't have the surgery that year next year, I probably would've dropped dead or been paralyzed from neck down. The surgery brought other complications, and I have to get an MRI every year to make sure nothing grows back, but I'm still here and grateful the tumors weren't cancerous

[@falloodaboy]

Hi, can you talk about what the complications were from your surgery if you don't mind me asking?

[@kb32872]

@falloodaboy Yes, I dont mind sharing. I developed severe neuropathy in my right leg about 3 months after my surgery. i have it in my left leg but not severe all. I developed a condition called mylopathy, which is bladder and bowel incontinence, but over time, I've learned to control mine. I have left side weakness, so I can't raise my left arm or walk without assistance. I used to have blackout spells that lasted a couple of months, but my neurologist said that wasn't uncommon. Also, my body is sensitive to noise. For example, if someone shuts a cabinet door, I'll jump, but that has gotten better. I think that's part of my nerves being all out of wack. The tumors sat on my spinal cord so long that it was dented, so my neurosurgeon said he had to slit my spinal cord to straighten it back out. I suffer with multiple complications but I'm glad I'm alive my neurosurgeon said he's been a doctor over 40 plus years and never saw a case like mine he said usually a person would've dropped dead or either end up paralyzed from neck down. I spoke with someone who knew someone who had the same issue as me the person woke up and couldn't move they were rushed to the hospital found out they had tumors on their spine doctor gave him 6 months to live and he passed 2 weeks after his diagnosis so I'm very grateful I'm still here despite the health issues I have.

[@falloodaboy]

@@kb32872 Thank you for sharing, and I'm really sorry you have to go through this. I will keep you in my prayers.

[@kb32872]

@falloodaboy you're welcome and thank you as well

[@stellamariss3335]

Wow I’m glad you found the right doctor in time

[@genericname9024]

Damn, kudos to her father. Helluva man. Unfortunately not all parents will advocate for their kids like that, especially about high levels of pain where previous doctors have dismissed it.

[@RollingWithJess]

@@genericname9024 both of her parents have been absolutely amazing caring for her everyday to get her diagnosis and post surgeries too 💕

[@peace.404]

Wow! I’m so glad her surgery was a success!!! Amazing!

[@VanessaAndrade-fw6vq]

Wow I've never heard of this. It's very scary. im sorry she has to deal with this. Im glad she got the surgery thats helped her heal everyone deserves a free life of will.😮😢

[@emilyh.9240]

I’m so glad she was able to have the surgery! ❤

[@sophokhi]

I really hope she can feel better. I wouldn’t wish chronic illness on anyone. I’m relieved she has great support from her parents, it’s so admirable how her dad fought to help his daughter ❤

[@katherinegaryclarkegoddard7365]

I don’t understand why people say that people are faking horrible pain. I know sometimes the pain I live with means I struggle to get from my bedroom to my bathroom which are next to each other

[@brandip77]

I had no idea this was even a thing. My heart goes out to this young woman and her family. Ang I’m so thankful for our healthy teenager. I wish this young woman healing and a full, healthy life.

[@ashleighdahlstrom433]

Imagine being such a disrespectful human being to accuse her of faking all the pain she has gone through and her condition. How can someone be so careless about how their actions and words affect others. Crazy how many people out there are so careless like that, blows my mind.

[@stvnsonrated]

The people who’s calling her a liar are the ones who constantly fake their chronic illnesses. It’s enough sympathy and empathy to go around. Some people can be extremely weird!

[@BobbyDirt]

I don’t have any diseases, but I can’t stand when someone doesn’t believe me when something’s wrong. Huge peeve of mine.

[@Loroths]

What an inspiring young lady and amazingly supportive parents. I've had a few conditions in my life but i can't even imagine my brain - the brain! - slipping out of the skull. That's just insane.

[@abdullahak2204]

Hope things get better for her!

[@aubryilkanic2055]

As someone with hEDS I am at risk of developing this. Along with a lot of other stuff. I always relate to these people because the pain from these conditions is horrible and the best they can do is not always helpful.

[@Wolverineeeeeeee]

I can definitely relate to her about having to wait for an MRI. I won the genetic lottery and got all the co-morbidities that come along with my VEDS, including Chiari. My CSF flow was severely restricted, and it caused me to have seizures. It took me 5 years to get a neurologist to order an upright MRI(my herniation was only 3mm and didn't fit the Chiari One diagnosis with a regular MRI). I was finally diagnosed and had to travel across the US to get the decompression surgery since local doctors wouldn't touch me due to the VEDS. The surgeons didn't realize how bad my Chiari was until they saw it. They had to remove some of my dead brain tissue that got strangled to death by the bone embedded in it. I've been seizure-free since 2 weeks after surgery when the swelling went down.

[@niconii3663]

"i dont blame those" she is such a kind soul. her friends treated her terrible and she is still so nice. in my opinion these "friends" werent real friends bc even if they dont exerpience it they could at least tried to inform themselves about the disease instead of going straight up "i dont believe you, you are faking your symptoms".. thats not how a friend - or anyone tbh - should react.

[@elizabethbath5080]

A couple of things, 1. My father also got my surgeon to take my condition seriously after 2 years of them saying I was fine. Unfortunately it was too late to save my vision in my left eye even though they operated 4 days after my father intervened. 2. I haven't seen a single one of my friends for the last 4 years since becoming so unwell. I have a brain tumour, cerebral aneurysm, severe OA, RA, EDS and fibro. I'm going into hospital 30th December for a right leg amputation and in September 2025 I will also be having my left leg amputated. Even my husband of 30 years didn't believe my illnesses were as bad as they are and used to throw my medications out. He also refused to allow the adaptations occupational health were offering me. At 50 years of age I've had to move in with my parents, and I am so incredibly grateful that I have such amazing parents

[@stephanieann622]

My nephew had the surgery for this. He also has ulcerative colitis. Poor kid was diagnosed very young. I hate for anyone to suffer. Hang in there beautiful people…it’s worth the fight ❤

[@Jediahbear]

I have a lot of issues with my health and have lost friends because they thought I was faking my health problems. At the end of the day, I know these people weren't real friends to me and I'm better off without them. It hurt me a lot at the time. But remember that you are not alone and the people surrounding you at both your best and worse are your REAL friends.

[@KellyPhelps-t4y]

This is a serious condition. I watched my cousin for MONTHS doubled over in pain, nauseas from headaches, crying from the heat and sunlight, literally about to pass out, all for her to get gaslighted from 3 doctors. Finally a doctor decided to do a brain scan and there it was, Chiari Malformation. She had to have surgery immediately, and she had 6 month old twins at the time. It was a nightmare. I felt so bad for her. Her heads aches have subsided but the surgery didn’t fully make the pains go away. I truly feel for anyone who suffers this condition, and wish it was more well known. A lot of people might have it but they might not know what to look for.

[@eliselaughlin1886]

Emily, I’m so happy you’re feeling better. I too can’t understand why someone that says you are faking. You’re so young. Why would you want to be stuck in bed all day with a headache. Not able to get up. People are rude.

[@jamilatif4869]

ya, folks can be more unkind than hungry snakes 💕

[@doingtime20]

This is why families should stay together, life can be hard as is. Don't fall for ideologies that try to separate families people.

[@AM-dd6ox]

I’m so glad to see that your second surgery provided you the relief that you deserve! I was under the care of my 4th neurologist due to chronic migraines for roughly 12 years and mentioned that my sister recently being diagnosed with chiari-before I ever had my head, neck, or spine scanned in any way. I’ve learned that it isn’t talked about enough in the medial field either and you can find very different opinions from different neurologists. Thank you for explaining your mris that was very helpful and I hope you continue to stay pain free!

[@laurabs5459]

I have chiari malformation. Had decompression surgery. It's been 12 years now. I hope you get the surgery you need.

[@Emily3Sarah]

Thank you, I hope you’re doing alright ❤

[@bellevogler3394]

My daughter (8) was diagnosed with Chiari 1 Malformation a few months back and had the decompression surgery. It's been a lot for her to deal with. And for us as her family too. But we are learning what does and doesn't help her and how to best support her. Everyone's symptoms are not always the same and it's a learning curve. We are hopeful though for a better future.

[@ReineObermier]

I have a very very mild form of this where I don’t need surgery hugs sweetheart don’t listen to people who say your faking it. This is very serious and it’s disabling and painful for people in your condition. Big prayers

[@TheKatarinaGiselle]

I live with chronic illnesses and multiple autoimmune diseases as well, and I got so fed up not being heard that I stopped going to doctors 7yrs ago. I feel helpless. It’s really hard.

[@OogleBoogleMoogle]

I am so happy your surgery went well! I am glad you have an awesome friend like that, and I hope that you get back to doing the things you love soon! You are awesome, and we all lov and support you Emily. I'm so happy for you!

[@Emily3Sarah]

Thank you so much! I am so grateful having Hattie. Xx

[@OogleBoogleMoogle]

@ no problem! It's awesome to have friends with you no matter what.

[@stephanied6727]

What an awful disease. I'm glad the surgery worked for you! I have a chronic disease and lost a lot of friends in the last years. People don't understand when you suffer from an "invisible" conditions.

[@malayssiashells3675]

i can only imagine how hard this journey has been for her and now that she feels better I'm so happy for her!

[@Emily3Sarah]

Thank you x

[@malayssiashells3675]

@ 😊♥️🫶🏾

[@nikkic7776]

I'm glad the surgery gave her some relief, that sounds like an awful illness.

[@KaylaPearlCPNinja]

People who accuse chronically ill people of faking their illnesses really need to walk a mile in their shoes for once and recognize that these people are NOT faking anything! It angers me when people accuse others for faking their disabilities or chronic illnesses when they actually have their medical conditions and have physical proof of their medical conditions. I had an intraventricular hemorrhage and hydrocephalus before I was born and was diagnosed with cerebral palsy and I have been fortunate enough that no one has ever told me that I was faking my disability, but I absolutely hate it when I see people with invisible disabilities being constantly questioned and accused of faking their disabilities as not every disability is visible. Invisible disabilities are just as valid and just as crippling as visible disabilities.

[@MsNiesh1984]

So sad, smart, young and beautiful. I never even knew something like this could happen until now. Never stop advocating for yourself. Wishing her a full speedy recovery and healing, peace and all the best in life. 🙏🏾

[@thekathrynwest]

As someone with this condition, it's a struggle. Some days are fine, other days not so much

[@Bowser14456]

I have scoliosis (ive also had surgery for it), but I've never had any pain like this. I would be terrified if I had this. I hope you get the help you need Emily. Good luck.

[@xbrandi12345x]

A friend of mine has the malformation you mentioned but I had no idea this was what she could be going through. This doesn't sound easy to go through, my heart goes out to anyone that has this

[@blackrave546]

My friend found out she has this last month. She's having surgery on Dec 18. ❤

[@greaterglider]

Hopefully it all goes well

[@Andy251153]

such a heartwarming story, i am shocked at how so many people could just be so cold and not understandig of having an illness or any sort of condition

[@katecardinale8881]

Congratulations sweet heart! I’m so happy the surgery was a success. Sending love and affirmation your way! ❤ You are not alone!

[@johno9507]

I know what it's like to have friends just disappear because of illness, even after 30+ operations I've had people say I'm faking it.

[@dollsNcats]

I can’t even imagine this :( ! As someone who gets headaches that literally get so bad I can’t even open my eyes , I can’t even imagine how bad this is 😭

[@cilla4000]

Sending prayers to her and her family ❤

[@sylviafonseka9263]

Bless her and everyone stood beside her❤

[@mysticzebra5421]

My mom has minor chiari malformation. Her doctor just decided to do nothing about it eventhough she often has pain. She and I have a lot of the same symptoms and you can very easily feel that my skull is a funky shape (thank god i have a lot of hair) so she's been wanting to get me assesed for chiari malformation as well for a long time now. Luckily neither of us are as badly off as this young lady though.

[@gemi08080]

she needs to get a new doctor😢❤‼️

[@GUNCLANFC3]

Incredible strenght shown by this young woman.

[@phillipadoran9341]

My sons got chiari malformation he had 2x decompression that caused hydrocephalus so he now has vp shunt his was herniated 21mm at the start now we are dealing with cerebellum slump as they did take to much bone out and made his sryinx bigger now he has 3 separate cysts in his spine he has syringomialia alfie loves his zip bless him, his was found at age 3 hes 13 today its his birthday fingers crossed for your futures 😊 just wanted to 1 add my sister also has which they say its not hereditary which I find unusual also 😊

[@alleshaxx1419]

Happy birthday Alfie 🎂 wishing him a bright and pain free future

[@sunflowerproductions8259]

I also have malformation Chiari syringomyelia and hidrocefalia 😮‍💨

[@phillipadoran9341]

​@@alleshaxx1419ahhh thank you 😊❤

[@rachaelm3298]

Having Arnold Chiari, spina bifida, and scoliosis myself, this makes me feel validated. While i thankfully haven't suffered with chiari to this degree.. there have been other complications due to all three but because it's so complex, they can't actually do anything for me in terms of the often life altering issues/symptoms in terms if an operation. So I'm stuck heh. But I'm so glad this lovely woman could get the help she needed. It's a very difficult battle. I also have depression and a GaD all of it combined I've basically given up.😅 Bed bound most of the time.

[@joannemates6367]

OMG!!! I’m 51 years old and I never knew this was even a thing. This poor young woman. I wish you so much love, strength, healing and peace, Emily. All the way from Country Victoria, Australia . ❤❤❤❤❤💪🏻💪🏻💪🏻💪🏻💪🏻✌️✌️✌️✌️✌️✌️✌️🇦🇺🇦🇺🇦🇺🇦🇺🇦🇺

[@Emily3Sarah]

Thank you so much xx

[@moxie86]

Bless her heart. My little baby has a brain bleed. She's in the NICU . At least episodes like this give people hope that others might be ok. May God help them all.

[@Emily3Sarah]

I’m so sorry. I’m sending you guys all my love ❤

[@Azulakayes]

Wow...Emily is so brave & I am glad she is raising awareness on her chronic illness.

[@norawong6310]

I pray for the success of your impending surgery.

[@ML-ov5qi]

I also had decompression surgery during a year of torture medically. 25 brain/shunt surgeries, meningitis, MRSA, multiple staph infections/bacteria some involving the spinal fluid. I had 40+ by the age of 28 (35 now and I’m sure there’s more surgeries in my future). I go to pain management (started in 2020 although was repeatedly encouraged to go to pain management for years prior, but delayed because I was pretty sure something like this would be the outcome. Sadly I was right and it’s worse than I thought I’d be treated) and because none of them have ever had a pain patient with my diagnoses and surgical history, it’s impossible to be in pain that bad and that long. But they are so sure and dead set on knowing better/more than I do. It’s impossible that I can have chronic headaches and other chronic issues as a result of my medical/surgical history😢. I get told and treated like I’m drug/attention seeking. On top of that I’m also told that what I’m experiencing isn’t pain, (like they’ve personally dealt with it…) apparently it’s not pain when there’s too much spinal fluid and the shunt either does too good of a job or not good enough so there is always an imbalance. The fact it feels like my head is going to explode…(I’ve tried to explain it like this although not quite the exact situation…) imagine filling up a water balloon, the more water you put in it the bigger it gets and the more it stretches/is thinned out. The water is putting pressure on the inside of the balloon/skull until it bursts. Now adults skulls can’t expand so it gets pressed up on from the inside, quicker than a water balloon. Because the bones are fused the more and more pressure if being put on the skull from the inside as quickly as it’s produced). But apparently that’s not painful… I understand to an extent what she is going through and doctors treating patients in any serious pain can be so rude and accusatory, it’s even worse when you are also fairly young. Sadly I deal with the judgment and still have pain and can’t live a normal life anymore because of all my body has been through. I’m hoping this other surgery will work wonders for her and all the best for an amazing outcome!

[@Apexsilverevo]

Seeing her father become emotional just at the thought of the pain Emily suffers really hits home for me. I couldn’t imagine knowing my beautiful daughter (who is now 22 and a new mother herself) was suffering so much AND for so long. I’m glad to see that they are making progress and wish them all the best. 🙏💯

[@paulablack1863]

Awesome! That last surgery helped a lot. Good. Bless her and her family. ❤

[@MariaReyes-zm2xw]

I have Chiari Malfunction 1 with a 5mm herniation with a lot of symptoms, my whole body hurts including my scalp and gums some days it’s just so hard to get up. It’s sad that some people don’t believe you, I was told that I was just making it up so that people feel sorry for me. Now I just won’t say anything. I thank God I have my true friends and family that are they for me. Sending prayers and blessings 🥰🙏🏼

[@mrj-charles6383]

I am in the USA and so many people here want socialised medicine but fail to see the downsides. I am happy this young lady had the savings to be able to get the surgery to get her life back on track. She seems like she has a wonderful supportive family.

[@roselyncampisi822]

Prayers go out to you sweetheart!

[@imisinjan]

When your are in a difficult place, that is when you find out who your true friends are. I have a condition called gout which can be extruciatingly painfull when it flares up. I have been told that im either exagerating the pain or it's self inflicted such as eating rich foods and drinking port wine etc etc. My advice is to focus on those people who are there for you and make the most of each day as best you can. Just remember that you are not alone. Wishing you all the best young lady 🙏

[@wrghty]

Seems like an articulate, smart & sweet enough girl. Hope everything works out for this young lady

[@silverangel9774]

As someone with Chiari Malformation I’m glad someone is actually speaking out and spreading more awareness about it since it’s a really rare condition I hope you are feeling well Em!😊

[@QueenBCheese]

Way to advocate on dad’s part!! Thank his you had him❤️❤️❤️

[@RollingWithJess]

Both of Emily’s parents fought so hard to get her diagnosis they do so much for her, they are truely amazing people x

[@amandamills6181]

They're not real friends if they don't believe you. When I was about your age, a doctor told me it would be decades before most of my contemporaries would start to have chronic health issues of their own, so I would have to suffer a lot of judgment. I've just bided my time, & people are starting to look at me differently. They see now that what I've accomplished is not so bad considering. Hang in there & hang onto people who believe you, even if they can't completely understand.

[@eeltenaj19]

Wow! I am gobsmacked 😮 I wish you some measure of peace dear woman. People who live with chronic pain are utterly amazing! Those of us with little pain would be curled into a ball if we had anywhere near the pain this woman has. 😢

[@CosiestKarma]

My mom and younger sister have Chiari Malformation. My mom has suffered for years and also had the decompression surgery which brought her no relief. People don't understand how debilitating this condition is just because it isn't a disability that can be seen. People with this condition also have a much shorter life expectancy which adds on to the tragedy of it all.

[@LaineTheLark]

I have Ehlers Danlos and I know many of us are at risk of CM and I am so grateful for many many people finally working on the problem.

[@Naomihangar]

Omg Thank god she survived. i feel so bad and after when her friends didn’t believe her i was crying so bad. Thank you god for saving her.

[@mahoganydrive]

So glad the surgery was successful. And so quickly too. I hope this surgery becomes available and a covered expense for more people.

[@linabelida]

emily is the sweetest soul ever. i love u emily if u see this.

[@Emily3Sarah]

Aw Lina I love you too thank you xx

[@jackiesexton2783]

I hope and pray that you get all the treatment needed to help you live a long life and I can tell that you have loving parents and support from family and friends. I unfortunately have been sick most of my life with multiple conditions that cause pain and I even had a few doctors who couldn't figure out why and because they couldn't tell me that my pain was all in my head. The last doctor that made that comment to me I told him if it were all in my mind I would have gone to a psychiatrist and gotten over it by now and I left his office and refused to pay him a dime. I then went to another doctor expecting the same attitude and was thankfully listened to and I was diagnosed with a rare condition that doctors were just becoming aware of. I called the doctor's hospital director that I had previously seen and filed a complaint against him and they assured me that I didn't have to pay for that visit and said that they were shocked that he had said such a thing to me to begin with. I have since developed several other health issues that are just as painful but I don't let it stop me. It might slow me down a lot but when I get determined to do something I will do my best to get it done. Might take me longer and be more creative about how I get stuff done. I hope you keep putting one foot in front of the other and never let anyone tell you can't do something.

[@ReineObermier]

Prayers for a successful surgery

[@SarahMichelle777]

Bless her heart! I didnt even know this could be an issue. I feel so bad for this girl.