Arnold-Chiari Malformation

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Arnold-Chiari Malformation
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    What’s on your wishlist?

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    9 people are talking about this
    Community Voices

    Test result Tuesday #SpoonieProblems

    <p>Test result Tuesday <a class="tm-topic-link ugc-topic" title="spoonie problems" href="/topic/spoonie-problems/" data-id="5b23ceba00553f33fe99d163" data-name="spoonie problems" aria-label="hashtag spoonie problems">#SpoonieProblems</a> </p>
    9 people are talking about this
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    Community Voices

    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

    4 people are talking about this
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    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

    6 people are talking about this
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    Community Voices

    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 person is talking about this
    Marie Burke

    Why Unsupported Chronic Pain Leads to Suicide

    This post is long. It’s extremely personal — it’s super heavy, and there aren’t any jokes here. What if you were sick? Like, really, really sick. What if you were so sick, you couldn’t get out of bed? What if every part of your body hurt all the time? What if you were too tired to do anything about it? What if you pleaded for help, for years, and no one believed you? What if you started to self-medicate out of necessity? And what if the same people you’d been begging for help then called you a drug addict? What if they told your children you couldn’t be trusted because of your addiction? And then… what if you found yourself alone? Abandoned. In pain. Exhausted. With no one left to turn to, afraid to leave your home. What would your motivation be then, to press on? This may or may not be hypothetical. Here’s what I know for sure: September was Suicide Prevention Awareness Month. It was also Chiari Malformation Awareness Month. This year, 2020, is the year I am very aware of both. I recently was diagnosed with a chiari malformation during a brain MRI to check for a possible aneurysm or cancerous growth. I am still learning about the condition and those associated with it — I am in no way an expert — but here’s a brief (and highly incomplete) explanation: “Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.” Here’s how these two things are related in my mind: The thing about having a serious condition that causes chronic pain that no one knows exists… is that no one knows it exists. I didn’t even fucking know this existed until a month ago. I knew something wasn’t right. I’ve always known. For the entirety of my lifetime, spanning only 10 years fewer than my mothers life to date, I’ve been trying to understand completely debilitating symptoms that until now were presumably my own fault. You can’t see it. It’s nearly possible to explain. It affects every part of your life. Something’s wrong, but no one believes you. You feel less than, lazy, ashamed, hurt, angry and confused. It always hurts. You can beg for help, and spend all of your money looking for answers, but in the end, barring an unrelated and severe medical event, or a very concerned loved one (thank you, Ted), you will continue to suffer. And no one. Will. Believe you. Thirty-three years in the making. Since my diagnosis, I have not been able to reconcile my feelings of anger and frustration at being so thoroughly dismissed. At being told I have various mental illnesses (which by the way, I definitely do, not sure why that’s a catch all for “crazy” but OK). Facing the probable (and only) treatment of one or multiple surgeries — during which my skull will be cut open and pieces removed to relieve the pressure on my brain, brainstem and nerves that have been forced into my spinal canal and caused lifelong headaches and irreparable nerve damage — I couldn’t even bring myself to be scared. My righteous anger at the injustice and indignity of it was nearly all encompassing. And then, amidst the absolute rage and fury at how unfairly I’ve been treated, and the opportunities I’ve lost — right between a “how dare they” and a motherfucking of someone or something, I experienced a moment of absolute horror, as something flashed through my mind like a goddamn nightmare: Maybe she was “crazy.” Maybe she was an addict with an insatiable appetite for pity and painkillers who didn’t care for her children out of selfishness and spite. Maybe she enjoyed living in filth and not being able to provide even the most basic necessities of clothing or food for her family. Or maybe… … maybe she spent 43 years screaming for help and being ignored. Maybe she went to extreme measures to obtain any sense of relief from an ongoing agony the rest of the world told her she’d made up. Maybe she stopped leaving her bed, interacting with others, became desperate and isolated because she hurt, and was too tired and weak from fighting to keep trying prove it. The ties between chronic pain — both physical and mental — and suicide are well-documented. Everyone has a threshold, a breaking point. Fuck, even Clooney admits to considering taking his own life due to a back injury that left him in constant pain. A wealthy white man with unlimited resources, money and access to medical care thought it might not be worth living through. I can wish all I want that I’d known then what I know now. I can wish I’d not been a child, and that I had been able to decide for myself who and what to believe. But in the end, I’ll never know. Unlike her, this is something I’m just going to have to live with. What I do know is that life is hard. Being poor is hard. Being a woman is hard. Facing the unknown is hard. Knowing you’re right and being unable to prove it is hard. Being marginalized is hard. Being sick is hard. Admitting you need help is hard. Admitting you may have been wrong is hard. Being a fucking person is hard. Anywho. Might’ve taken long way, but now that we’re here: Check on your loved ones — and be there to follow through. Your ability to see an illness does not dictate its realness. If you don’t know shit, don’t say shit I may not know what comes next — but unlike so many before, I’m at least gonna get one.

    Community Voices


    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

    3 people are talking about this
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