Chiari Online Support Group

Any United Kingdom Warriors Out There 😘

Hey there please read my profile if any of u are interested in chatting more. Be happy to hear from u. Sorry to say United kingdom…It’s just that due to the NHS out experiences and treatment mat be different.

Any chairi warrior is welcome :sunglasses: keep the fight :muscle:

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Hi i am in Ireland so not too far away. I don’t post much but it helps sometimes just to stay connected as I dont feel so alone. I look fine to everybody but the dizziness tiredness and everything else makes me think sometimes is this all in my head. Our health service here is poor full of bureaucrats talking rubbish and doing nothing. I waited three years after my decompression surgery to be seen by a neurologist. Anyway enough negativity keep your chin up and know you are not alone. Fill your life with as much positively as possible.

Hi,
I am so pleased to find some other people from the UK. I feel so isolated. I am 54 and have probably had Chiari from birth although I have only just had it diagnosed after 20 plus years of not feeling right. I also have a scoliosis of the spine.
I have spent my life attributing all my symptoms to my spine and “just being sensitive”. My GPs then put it down to stress of my job in the NHS and my menopause.
I don’t think that there is much help in the UK. Surgery for children or Syringomyelia but otherwise they just don’t seem to know what to do with us, especially at my age. I get all the symptoms, pain in my back and neck, dizziness, nausea, swallowing issues and a lot of “just not feeling right”.
It would be great to learn about your experiences.

Hi there. I’m from Northern Ireland. Just been diagnosed but have not got any idea what the next steps are. Worried NHS is just going to put things off until it’s too late :cry: