Chiari

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In 2019 I randomly started having hemiplegic migraine s and had them for 40 days straight-my neurologist dx me w HI after I end Ed Up in er and they did spinal tap and mri . The past week I started having major symptoms again and I wanted to ask him about Chiari. Here is how it usually go’s: neck stiffens, then eye zig zags swirls , phantom smell, left side face droop, aphasia, then the screaming pain behind my right eye. And it’s like a throbbing cymbal inside my head. Severe dizziness especially when eyes closed or walking, so falls happing. Nausea and vomiting. This time it slowly crept up, I thought I just pinched a nerve in my neck cuz I can hardly turn left, went to chyro and as soon as he adjusted I got a Sever headache and dizzy, then it’s just gotten worse ever since. I have all of the above symp except my eyes are just swollen and pulsing, and my head pain is less intense. Oh and severe neuropathy. Any one agree it’s JUST IH or could I possibly have chiari ? #IntercranialHypertension #ChiariMalformation #HemiplegicMigraine #spinaltap #neurologist

Community Voices
Ash

Chairi Malformation Diagnosis

I’ve been dealing with undiagnosed issues for all my life but no one could ever figure out why I would pass out. For eleven years I had ever test except a ct and mri of my brain. Yesterday I went to the ER after passing out for the first time since being away at college. They did a CT and MRI, turns out I have Chairi Malformation.
As much as that’s great to finally know what’s wrong, it’s also horrible news. I was essentially told I need decompression surgery but my parents won’t pay for it until I get a second opinion.
I want surgery just for the slim chance of decreasing the severity of my symptoms but it’s also terrifying. There are so many things that could go wrong.
I’m also having to rethink so many things and I’m going to have to put my life on hold for surgery. I just started college, I don’t want to have to take a semester off. I may also never be a surgeon because I can barely stand for more than two minutes without passing out, I won’t make it as a surgeon.
I’m so scared of everything and I have zero support. No one in my life understands what I am going through physically and mentally.
#ArnoldChiariMalformation #ChiariMalformation #Chiari #chiari1

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Is there a hospital or group out there that can help with people with chiari that can't get help

I had to learn the hard way about my family, they only wanted me around when they wanted something. Now they feared that one of them would get stuck with helping me out throughout all of this and bailed. Even my boyfriend who decided that since it's my fault I got sick that he would pursue other women who could satisfy his sex needs. (We're talking escorts) now it hurts when he pees and I laugh cause I haven't tough him in a year since I found out about his 2 side https://baes.ive had probably about 20 doctor visits this year that he has failed to take me to. I have no vehicle,I've already had a stroke and having seizures my family turned their backs on me, no friends because of him, he has already pulled a gun on me twice and threatened to run me over just last month. I've contacted police,homeless shelters,family. Nothing. I can't get the care I need. Does anyone know of a nonprofit (no homeless shelter) that someone who can barely take care of themselves with spine disorder and chiari but still live as independent as possible? I've asked united spinal assocation but they don't understand I don't have a working phone. This man does not take care of anything, he wants someone to give to him all the time. He doesn't fix anything that's why I'm living in a deathtrap. I wish y'all could see this hellhole I live in. I want out but I don't want to end up on the street. I'll never survive
#Chiari

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Community Voices

Journaling has really helped me sort through some hard thoughts lately and I had to share this one.

<p>Journaling has really helped me sort through some hard thoughts lately and I had to share this one.</p>
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Community Voices

Some Dreams Can't Come True

Have you ever been on vacation where you got to just... step away from it all?

I fantasize about that, but not too much, because then I get emotional. I think it's good to have dreams, even if you don't know that you'll ever reach them. Something to strive for can be uplifting, and a great motivator in life. It's different though if you feel like it's truly impossible, and that is how I feel about my dream vacation.

The reason? My body would have to be there.

To be fair, I've had some lovely getaways. I've never been on a fancy cruise, or flown away to some exotic local for a pampered vacay, but we've been blessed by friends who gifted my husband and I some time away from the day to day responsibilities. We had a view of the mountains, and very little out of pocket expense. Our pets were cared for, we had nothing on the schedule, and it was lovely.

So what kept it from being the dream holiday? Pain, nausea, insomnia, medication schedules, subluxations, allergies, etc.

It is one of the most difficult realities of my existence. The concept that I can never get away. I get so very tired. Sometimes I feel like I am parenting my own body, but I don't get the rewards of actual parenthood. Just the late nights, disturbed sleep, constant learning, tears, and talking to pediatric Dr's (because often those are the ones dealing with my conditions).

Right now, my body is cranky, because it randomly decides to not digest anything properly, which is currently flaring, and that affects my ability to take my meds and/or absorb them properly, so I'm particularly hungry, sleepy, and my pain is especially high. I get tired of having to comfort myself with thoughts like "well, a lot of people with my comorbidities end up with a feeding tube, and at least I don't have to do that yet", while simultaneously thinking "that shouldn't have to be where the bar is set for what's 'good' with my body". Don't get me wrong. There is a lot of good in my life, just not the physical vessel I'm stuck in.

#ChronicIllness #Chiari #Syringomyelia #EDS #HypermobileEhlers-DanlosSyndrome(hEDS) #Dysautonomia #Zebra

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Has anyone heard of or been diagnosed with Chiari 0? I have all the symptoms, pain in my face, no balance, trouble breathing, trouble swallowing, I can't hold a conversation because I have trouble coming up with words,my whole body spasms, I fell like my brain is smooshed against my skull, I have heart palpitations all day, my ears are ringing, I feel like I way a thousands pounds, my fatigue is so bad I don't get out of bed I have #SleepApnea . If Im on my back i can not lift my head straight up its to heavy, my ears burn, my vision is like ill turn my head but my eyes dont turn with my head so I constantly have to look down, and Moreno found out 3 months ago my nose and eye socket have been broken and fractured for 22 years, I got jumped by to guys who beat until I was unrecognizable but my neurologist doesn't want to hear it because he can't see a malformation, which I discovered you can have Chiari without the malformation,ANYONE HAVE ANY THOUGHTS,PLEASE #Chiari 0 # #OC DEPRESSION #Anxiety

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Chiari, College and Crutches #Chiari #ChiariMalformation

These past couple of weeks, my life has been turned upside cause I have Chiari. I woke up on Sunday in pain like a semi ran over my head, my speech isn't what it used to be, I struggle with talking now too.

Has anyone else had progression like this? Cause Friday, I was walking up my Dormitory's staircase with my parents, I was slowing down and it was starting to become. Now its hard to even walk up/down the stairs cause it felt like I was doing the mile just to get to breakfast. I ended up giving in to get crutches to help me walk and get around my college's campus.

Please reply, anyone?

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Community Voices
Community Voices

any advice?


#Chiari
I live in MS & I was diagnosed in 2012. I haven't had any recent work ups and I cannot get doctors to listen. I've been ignored twice. how do I ask or talk to them? can I get around a PCP and talk to a specialist via remote consult somewhere? or just give up completely? I'm going more toward the last one but I'm still trying to hang.

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