Chiari Online Support Group

Struggling everyday


Hi, everyone my name is Lillian I’m 19 and I was diagnosed with ACM before I was 2. Shortly after I had decompression surgery and it helped for most of my life. The 18th anniversary of my surgery is coming up this month and I’m trying become more open about my chronic illness to my friends and family since the past 2 years have been more than hard. I have seen 3 different doctors each with different temporary solutions. I’ve actually had to move back in with my parents because my health is declining. My doctors told me I would have a hard time attending college, and they were right. Trying to juggle college and work is proving more difficult than I had hoped for. So that’s my story.


Welcome Lillie,
Managing a chronic illness can be the pits, trying to do so around work and study can be a real challenge. I hope you can find some support that may assist from our network. There may be others here who know the obstacles that can arise and maybe able to offer you some advice/strategies to manage a little easier.

Merl from the Moderator Support Team


I had my chiarie surgery at 66, my leges woke up in 13 months. I had 2 good years 18 holes of golf every day. Then went down.I am so weak I can can not stand. Is any one else like this do I have any hope.