Hi, my name is Dee

mccalla
mccalla Community Member Posts: 1 Listener
in Start here and say hello!

I was diagnosed 12 years ago with Chiari malformation type 2 and had to have forum magnum decompression surgery due to severe symptoms . I am still having extreme headaches which end up with me being admitted via A&E annually. I now have 3 monthly nerve blocks in my skull which are excruciatingly painful with little reprieve . I have constant neck and shoulder pain , multiple headaches daily as well as other health conditions which I don’t know if are associated with the Chiari such as high blood pressure, cardio vascular disease, and irregular heart beat , and a hole in my atrium. I’ve started seeing an osteopath monthly to help with the tightening in my shoulders and to relieve the neck pain and wondered if anyone else is struggling with similar symptoms .
thank you in advance it’s very lonely out here as nobody understands how debilitating this can be x

Comments

  • WhatThe
    WhatThe Community Member, Scope Member Posts: 6,006 Championing
    edited June 1

    Welcome to the forum, Dee

    @chiarieds

  • Holly_Scope
    Holly_Scope Posts: 6,229 Online Community Team

    A warm welcome from me too, Dee @mccalla and thank you so much for sharing. It sounds like you've had a really tough go of it! I hope being with us here on the forum helps you feel less alone. If you fancy a chat, check out some of the discussions in our Coffee lounge area.

  • chiarieds
    chiarieds Community Member Posts: 17,413 Championing
    edited June 2

    Thank you @WhatThe - I just noticed your tag.

    Welcome to the forum from me too @mccalla - We have Chiari 1 Malformation in my family which is associated with Ehlers-Danlos Syndrome (EDS) in some who also have that. I don't have the headaches which sound awful, but am in pain the moment I'm upright due to neuropathic pain.

    Have you spoken to your GP/specialists about your other problems to see if they can shed any light upon them? Both my son & I & my youngest grandchild suffer from low blood pressure but that could be due to having EDS or Chiari. It's often difficult to know which symptom comes with which disorder!

    One of the places I look to for reputable info is the American Syringomyelia & Chiari Alliance Project (ASAP) who also have some really good videos from past conferences which are for patients. You can see them & more here or sign up for the next conference which will be a virtual one in July: https://asap.org/

  • luvpink
    luvpink Community Member Posts: 5,115 Championing

    @mccalla

    Hi welcome to the community.

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