Arnold-Chiari Malformation

Join the Conversation on
Arnold-Chiari Malformation
2.8K people
0 stories
202 posts
  • About Arnold-Chiari Malformation
  • Explore Our Newsletters
  • What's New in Arnold-Chiari Malformation

    Would anyone watch YouTube videos

    Hey everyone, I have been thinking about starting a YouTube channel, mainly to make videos about hacks and tips to living with a Chronic illnesses, but also thinking about doing some vlogging as well To show what it’s really like to be chronically I’ll , would anyone be interested in watching? Or have any video ideas? Would really like to start it but I am scared that no one will watch haha, any thoughts are welcome😊😊 #EhlersDanlosSyndrome #ArnoldChiariMalformation #Syringomyelia #Gastroparesis #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Anxiety #Spoonie #Vlog #spoonielife #PelvicOrganProlapse #ChronicPain #Hope

    4 reactions 8 comments

    Feeling run down

    How do you stop worrying about how everything is feeling and focus on your own mental health? I’m not in a good place. I’m constantly worried about every person in my life and feeling like I have to tiptoe around everyone. I can’t just let people feel their feelings because I don’t want them to be upset or sad but yet for some reason it’s ok for me to feel that way constantly. I haven’t been able to go to counseling in almost a month because of life. I have an appt next week but even then I feel like we talk more about how she can relate to me and things her kids have been through. Then I leave there feeling like I didn’t get anywhere. I’m in pain physically constantly and can’t get in to see a dr until November to get shots in my head. Physically and mentally I just feel worn out and don’t want to do it anymore but I keep doing it for my kids. I’m just so tired of everyone’s shit when I can’t even take care of myself. #Depression #ChronicPain #OccipitalNeuralgia #Anxiety #ArnoldChiariMalformation #IntracranialHypertension #Tremors


    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

    See full photo

    This topic will not leave the front of my thoughts lately. It’s a daily struggle. #ChronicPain #ChronicIllness #chronicpainjourney

    I have been on a self education journey about my Chiari malformation and the reality of my diagnosis and what I could be facing can be terrifying. But I don’t want to decide that I’m not going to improve or I’m not going to find a medication balance that might work for me. How do you find the balance between reality and hopefulness?? #ChiariMalformation #ArnoldChiariMalformation #ChronicPain


    Covid Safe Dates

    I'm in desperate need of date ideas! Because of all the health issues my family members deal with, I've been taking classes online and my parents are mostly working from home. We take as many precautions as we can. But, my boyfriend's family isn't as safe and he's attending college in person. We had been meeting at parks or sitting out on my deck, but now that it's cold we're out of ideas. What are some safe things we could do that won't leave us stuck out in the cold? #ChiariMalformation #ArnoldChiariMalformation #ChronicMigraines #Lupus #HypothyroidismUnderactiveThyroidDisease #CeliacDisease #EhlersDanlosSyndrome #Asthma #Spondylolisthesis #DegenerativeDiscDisease #Anxiety #Depression #ChronicPain #AutoimmuneDisease

    1 comment


    I’m on 3 different types of morphine, and have been for a long time. However just lately I am struggling to take my oramorph, as all of a sudden the taste is just making borke. Is there any type of drink I can mix it with that will make it taste better? I’ve tried a few but nothing has worked yet.
    #morphine #ChronicPain #ArnoldChiariMalformation #Osteoporosis #Fibromyaliga #Arthritis