Chiari Online Support Group

How long til our voices are heard


hey all im new to this group im sophie and im 28 from leicester
I have chiari malformation type 1 which has caused syringomyelia, 3 years it took me to get a formal diagnosis… I was referred to a surgeon through my consultant who stated many times I wouldn’t benefit from surgery so I agreed and now ive been discharged with no pain relief or anything!! it frustrating because my symptoms have gotten worse. ive pleaded with doctors to help me but they wont. im getting fed up of dealing with these invisible illnesses. anybody else in the same boat?


Sophie, it really is frustrating, isn’t it? I don’t have Chiari, but I do have an invisible illness that took years and years of doctor denial to diagnose. And then it was “OMG, you’ve got a bad problem…” The only way of making your voice heard is to keep speaking up. Can you go back to your consultant? If not, then I guess you will have to start anew with your GP. Your heart just fell, didn’t it? “Start again?” you thought … yup. Squeaky wheels and all of that. You need to have your symptoms and comments recorded on your medical record because, well, you never know. And if your symptoms are getting worse … things may be changing.

I hope some of the good people here with Chiari will pipe up as well!

Meanwhile, all the best to you

Seenie from Moderator Support


Thank you for your email… I’m pushing my doctor for a second referral… Which yes is a complete pain in the arse and my heart isn’t in it but I need to fight this not just for myself but for the thousand of other people who don’t have a voice for invisible illnesses. I won’t give up this battle, I’ve known for 3 years and it’s got the better of me 3 days… Here’s to fighting


And here’s to YOU, Sophielea! :beers: