New member

Hello everyone :slight_smile: my name is Lin and I was diagnosed with chari one in August this year, I have had no treatment as yet, I have a preassessment appointment in a few weeks. I am very frightened as I do not have much information on what decompression surgery involved! If anyone could help me I would be grateful

Hi I had surgery 2 yrs ago in Glasgow. Was straightforward and several other Chiari pts in on same week. Felt well after 3minths, off all meds and back to work at 4 months.However I had quite a long syrinx and it has become active again in the last year. I would have surgery again if offered, but seems they cannot do much more surgically and just been told to live with it. Off work unwell and struggling now. But surgery is definitely worth a try if you are offered it.

Thank you Allison, I am going for surgery at stoke hospital in July. I have decided to do it then in summer hols as it fits around work and family too! Having a few bad days myself at moment! People don’t understand that it’s not just a headache, you can only explain so much. It’s a bit like the doctors lol x hope you feel better soon x