Chiari Malformation

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Chiari Malformation
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    Community Voices
    Community Voices
    Community Voices

    Selfcare Saturday

    Good morning everyone! what are your plans for this weekend? or self care ideas? just saw this and thought it would be a great reminder for everyone to remember that you and your health are your biggest concerns.I definitely struggle with Saturday plans and feeling required to participate regardless of my spoons sometimes. The main thing is that, any plans, weekend or not never should mean more than your physical and mental health. Happy Saturday warriors!


    #EhlersDanlosSyndrome #Dysautonomia #MastCellActivationDisorder #ChronicIllness #Anxiety #ChiariMalformation #PosturalOrthostaticTachycardiaSyndrome #funny #Gastroparesis #Spoonie #SpoonieProblems

    6 people are talking about this
    Community Voices
    Community Voices

    When all you feel like is a $$$ to your Doctor 🙄

    I’ve been on the rollercoaster ride of what is the unfortunate ugly side of the country’s medical system, months of waiting lists, waiting from referrals from my primary care who will not touch me & authorizations from insurance AND I’M OVER NAVIGATING & ADVOCATING this never ending nightmare. I started this out of nowhere shoulder pain journey in November of 2021 here we are 24 doctors appointments, 12 prescriptions, 2 diagnoses 1 of chronic migraines & 1 of Chiari Malformation 1 - no surgery due to Chiari but there is some nerve damage in my brain which my NEUROSURGEON couldn’t telll me about because he just operates & referred to my neurologist. TAG your it!!! So now what…I sit here and wait in misery for your phone call to tell me when you can “fit me in next” WOOF

    Community Voices
    Community Voices


    Hi im having a brain MRI this weekend and wanted to know anything i should be prepared for. I’ve had one years ago but this one will be longer i think a hour atleast 😭 im very nervous to say the least my mom has chiari malformation and we think I may have it to #ChiariMalformation #MRI #Advice

    4 people are talking about this
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    Community Voices

    Hello all im manny new on here with newly 4/13 chiari 1 malformation drs are saying thts not causing my symptoms

    Community Voices

    Syringomyelia Awareness

    <p><a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23cebe00553f33fe99d9f2" data-name="Syringomyelia" title="Syringomyelia" target="_blank">Syringomyelia</a> Awareness</p>
    2 people are talking about this