Hello everyone I am new to the community and I am looking forward to "real people" talk regarding Chiari.
I am the mother of four amazing kids and 1 bully dog. I have an almost 14 y/o (Aaron), a 11 y/o (Matt), a 9 y/o (Sami), and a 7 y/o (Charlie). Here is our story:
My Matt has been having tics for quite a few years and 2 years ago they sent us to the nuerologist because they were getting quite bad and lasting up to a minute a piece (only involving). They said he was fine but if he developed a vocal tic or Matt was bothered too much by them, to come back. We went back in early February because Matt was having a hard time concentrating at school because of them. They diagnosed him with tourettes and sent him in for a MRI. About 2 weeks later they called and said everything looked good. A week after that, they called back with the real diagnosis...Chiari type 1. They referred us to a surgeon right away and sent us in for 3 more MRIs. After doing as much digging as I could, I did find out that his is 8 mm and there are no clots, but that is really all I know.
As far as the Parents Group...At the top of the page there is a tab that says GROUPS..click on that and it will bring you to all the groups....you can join as many as you'd like! Check it got....Have you guys checked out the BLOG Tab??? You can Blog yourself, or just read what others have blogged.
Let us know how things are going and if you need any help getting around here!
Thanks Lori, I saw friends and family so perhaps that’s it. I don’t navigate this site well as I’m not much in social networking but I do feel like support would be a good thing. I read just one mother’s account of her son’s pain and journey, so similar to our son’s and so many others, I was resorted to tears. I tried to respond and send a gift but when it asked for credits I pressed cancel and lost the whole thing which is probably just as well. Although our little guy got life saving relief for many symptoms, he still lives in almost daily pain so sometimes I find it hard to advise other parents because it’s their child’s journey and the parent was just chosen to accompany them through it and just do the best they can