jjpots Posted October 22, 2007 Report Share Posted October 22, 2007 For anyone interested-Extreme Home Makeover on ABC had on a family where the mother and three daughters all had Chiari Malformation. The mother on the show has a suuport organization for others with Chiari. The mom talked about how she saw probably 100 diff. docs over 16 years before she was diagnosed with it.JJH Quote Link to comment Share on other sites More sharing options...
jjpots Posted October 22, 2007 Author Report Share Posted October 22, 2007 Me again,There is a website too: www.conquerchiari.org another one is www.ASAP.org. Hope it's helpful for someone.JJH Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 22, 2007 Report Share Posted October 22, 2007 Thanks for the info.I did happen to catch the program.It is always good to get information out to others... Quote Link to comment Share on other sites More sharing options...
jjpots Posted October 22, 2007 Author Report Share Posted October 22, 2007 Hi Tearose,I was curious who your dr. for the POTS is at the Mayo in MN.JJH Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 23, 2007 Report Share Posted October 23, 2007 HI!I just noticed your post on MN docs and just answered!!My top notch doc is Dr. Robert Fealey.It is quite an experience going out there.You get to have a complete and thorough work up over a one or two week period and can be out of there with a diagnosis and treatment plan!If you choose Mayo, do a search to get all the tips and suggestions on how to navigate through the maze there.best regards,tearose Quote Link to comment Share on other sites More sharing options...
preacherswife Posted October 23, 2007 Report Share Posted October 23, 2007 My work-up at Mayo said that I had a borderline Chiari malformation.Yes, Mayo is a maze, but it's an amazing experience.Be aware though, that sometimes it's just plain hard to have all that medical stuff done in such a short period of time. It's taxing on the mind. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 23, 2007 Report Share Posted October 23, 2007 I just have to say I love the House pic! It is hilarious, and makes me laugh everytime I see it! Quote Link to comment Share on other sites More sharing options...
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