I just got diagnosed with Chiari and am meeting with Dr. Oro to talk about surgery. I was hoping to find a support group in Denver to go to, but my search has been fruitless. Does anyone know of such a group here or would anyone be interested in starting one? I'd really like some face to face interactions with other Chiari patients where we can discuss what we are all going through. Thank you and stay strong!
Jeff, Dr Oro is one of the good ones! I am sorry you have this diagnosis, but so glad you are on way to getting the help and support you need. Please let us know how your appt goes, and if anything pops up for you before then.
Jenn
Thanks! I hear he’s amazing! I’m basically going to go in and beg him to do the surgery. We’ll see what happens I guess. What bums me out is my Birthday is Valentines Day so I’m dealing with this instead of hearts and chocolates. Haha! I still want to find others in Denver who would like a support group though. This site is nice but it’s not the same.
We live in Golden. I haven’t found any support groups here either.
Yeah anywhere. Would you be interested in starting one with me? Or maybe just get coffee and talk about what we’re going through? This site is so impersonal.
Jeff,
I would love to talk. It is my daughter 11 who has the Chiari. I also have a really good friend who has a son with Chiari and she herself has. Friend me and we can talk more about it.
Hi jeff, I am in aurora. I had dr Oro do my surgery in 2009 I love him and his staff. I have not heard of any support groups but Dr Oro might know of some if you asked. for some reason I think I remember him or Kimberly talking about one. You could always talk to me too.
Hi Brittany!! So you had the surgery? How much time passed from when you first saw the doctor to when you had the surgery? We’re not sure I’m even going to need it but I’m trying to get a feel for everything? How long was recovery too? Aaah so many questions!