Chiari problem?

[Maceymae]

Hi everyone, I have MS, Endo stage 4,Fibro, chronic migraine and Chiari Malformation, I believe all the majority of my issues are Chiari related. I am getting worse. Does anyone know of any specialist in Dublin apart from CB? I would be really grateful.

[Hidden]

This forum is unfortunately extremely quiet. I’ve previously had 2 decompressions and a laminectomy for chiari, and found a chiari forum I located either via the Ann Conroy Trust website or brain and spine.org that might be useful to answer your question. I don’t know if it still exists or if it’s as active as it was (last op was back in 2014 and I haven’t really frequented the forum since then), but even if it’s now defunct, both of these organisations may be of help in trying to determine if there are any other consultants. In my own case, there was literally one option in Wales - you have to bear in mind that symptomatic chiari is pretty rare. Most/many people in England get referred to the Walton Centre due to the general lack of experience and expertise.

[Maceymae in reply to Hidden]

Thank you. I am surprised with the lack of information about consultants. I will check out those sites. Really appreciate this.

[Hidden in reply to Maceymae]

No worries at all - the main reason I stay a member here is just in case someone posts something where I might be able to help. I hope you find the information you need. The Ann Conroy Trust is the only chiari specific charity in the U.K and I found their resources quite useful at the time, particularly when I was initially struggling to get properly diagnosed. Please feel free to msg me directly if there’s anything else related to having chiari that you think I might be able to help with.

[Maceymae in reply to Hidden]

Thank you so much.