I think I may have a Chiari Malformation — Scope | Disability forum
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I think I may have a Chiari Malformation

This discussion was created from comments split from: Disability benefits without the fight.


  • Jona
    Jona Member Posts: 31 Listener
    chiarieds said:
    Yes, @Adrian_Scope - that would be fine.
    If you dont mind me asking... How did you eventually get diagnosed with Chiari?    Im convinced i have Chiari. My Tonsils are down by 3-4mm approx.. Constant fullness pain at base of skull..ears feel pressures and various other symptoms... Though i have co morbids that have similar symptoms...
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,026 Disability Gamechanger
    edited November 1
    Hi @Jona - looking back I see you mention spinal stenosis, if this is in the cervical region, that could be causing your symptoms, & the tonsillar herniation could be incidental. You can also have your cerebellar tonsils at a much lower level & be asymptomatic! On the other hand you also mention fibromyalgia, & some with that can have some similar symptoms to Chiari 1 Malformation.
    As you understand, the comorbidities you have may explain your symptoms, but best discuss these with your GP, who knows your medical history. You would need a referral to a neurologist or neurosurgeon, unless that's already happened, as you've presumably had a MRI.
    To answer your question, I found out there was an association between some of us with Ehlers-Danlos Syndrome (a genetic disorder) & Chiari 1 Malformation through an awful lot of research. Discussing this with a New York neurosurgeon (who had just begun to see some of his Chiari patients had Ehlers-Danlos Syndrome) he said my family had Chiari 1 Malformation (this particularly since our youngest daughter had both her vocal cords paralysed, which I found was likely due to Chiari, & which her Gt. Ormond St ENT surgeon also agreed with).


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