Chiari Malformation

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Chiari Malformation
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    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

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    Dezz
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    MRI

    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

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

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    Syringomyelia Awareness

    <p><a href="https://themighty.com/topic/syringomyelia/?label=Syringomyelia" class="tm-embed-link  tm-autolink health-map" data-id="5b23cebe00553f33fe99d9f2" data-name="Syringomyelia" title="Syringomyelia" target="_blank">Syringomyelia</a> Awareness</p>
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    Pediatric

    New to this site… Our grandbaby is only 18 months old and just diagnosed with Chiari malformation type one with a tethered spinal column. Her pediatric neurosurgeon wants to do surgery as soon as possible to correct the herniation. I’m not sure how big the bulge is. She has only just now started walking and she is a little wobbly. Of course her mommy knows more about other symptoms sometimes her eyesight is sensitive she likes to wear her sunglasses. She has some bruising and she pinches her legs a lot. Could this be numbness? We don’t know because she can’t tell us. She is very intelligent and talks all the time… She learns quickly. I am so heartbroken that she hast to go through this. Any thoughts?
    #ChiariMalformation

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    Emmm