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.