This is for those of you who haven't seen this video (because for some reason it just hasn't been uploaded to youtube... so i did that). It is the entire episode of Marissa Irwin's story from the Discovery Channel's show "Mystery Diagnosis."
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Thank you for posting! :)
Thank you for posting. I watched it with my daughter 16 and she was glued to the screen.
As I watched this I felt like they were describing me! I am definitely not "textbook" and have been told I have a retroflexed odontoid, but none of the Drs that I've seen seem to think it's a big deal, despite my telling them that it feels like a bone sticks into my brainstem! I have so many debilitating sx and when I completed the chiari sx checklist from TCI I answer YES To just about every one. I am desperate for help. I wish I could just go to TCI but they don't deal with my insurance and want thousands of dollars up front. What do others do to get help when you can't go to TCI?
Wow...
Thanks for the post! Good for that mother to have kept pushing forward.
This is the only reason I felt uneasy about posting this video, especially now - seeing the view count just climbing. In a way this video seems like a kind of promo for TCI and I don't want anybody to think that they are the only people who can offer help.
Here is just one list of Chiari specialists.
I'm not sure if we have one here on this site, but be sure to post on that forum and they will get back to you very quickly about where you can find help. There is plenty out there :) good luck to you and much love <3
Btw, I too have a retroflexed odontoid but my current NS feels very strongly that by making the space in the back will remove that pressure. I have posted several pictures of my odontoid on my profile page if you'd like to compare it to yours.
Also, don't forget that the cerebellum is responsible for things like posture so - being a guy who's always had horrible posture, I'm very interested to see what happens after surgery :) wikipedia-cerebellum
Hi Bill,
Thanks for posting that video and your comments. I'm sure it is to support TCI b/c it truly seems like they are the gurus in the field...the ones that have a complete grasp of patient's sx and don't just blow pts off!! I would go there in a second if it wasn't the $ factor. I have searched my area (NH/Boston) and can't find anyone. The one Dr that I did find... blew me off just from looking at a few films. Didn't even allow me to go and share my story and all the sx I'm having. Talk about being discouraged!!! Just b/c I'm not textbook doesn't mean that it's not real. And as far as the retroflexed odontoid...I've had 2 Orthopaedic surgeons tell me as if it means nothing...yet anything I read about it is a big deal and typically means that it's poking the brainstem! They must have no clue about chiari. I am so desperate for help.
Great Post Bill. Thank you !!!
Bill thanks again for posting this up. I sent it to people all over and put it up on every support group I joined on facebook. I wouldnt worry about advertising for that doc/hospital. Most people are going to try local prior to traveling. Hopefully this video goes viral and you get paid for the hits!
I also want to thank you for posting that video. I was diagnosed 2 years ago and I have had symptoms for 10 years or so. I am currently able to manage them, but I know of so many other Chiarians who live day to day in unbearable pain and disability. I am writing to encourage people to go that extra mile when it concerns your health. My son was 9 when he was having headaches. I suspected Chiari and was horrified that I might have passed this down to my sweet children. He ultimately was diagnosed with a brain cyst that was blocking CSF exiting his ventricle and causing him to go unconscious. It was intermittent hydrocephalus and it was confirmed that he didn't have Chiari. But he did need surgery. He was airlifted to one hospital in California but they didn't seem to know what to do about it because it was intermittent and he would awaken spontaneously after sometimes 8 hours of being unconscious. Long story short...we found a doctor in New York who specialized in intermittent hydrocephalus and we dropped everything and went to see him. He operated right away as he felt it was immediately life threatening. That was in March of 2011 and we are still paying off medical bills. Hospitals are willing to set up payment plans and often time they discounted the bill. My son is healthy, and headache-free...you just can't put a price on that. So, first do your research and see if there is a Chiari specialist in your area that does take your insurance. If not, contact TCI and ask about payment plans and financial assistance. How much of your life are you willing to waste seeing incompetent doctors who can't help you?