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Dr. Oz

I think we should start a movement to get this condition on Dr. Oz since his show is all about medical/health issues.
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1306714 tn?1327257080
I totally agree with you.  Dr. Oz is so informative and I know a lot of people watch it.  I will go with you if needed.  The Chiair issue does need to get addressed.
Helpful - 0
Avatar universal
I'm still so baffled to know that it's as common if not more common than MS and other conditions and yet until I started my "quest" to figure out what was wrong with me, I don't think I've ever heard the word Chiari.  And then to now know what I do and mention Chiari to several different doctors and have them all say (or sometimes even put in writing) that Chiari is nothing and warrants no acknowledgement is baffling.
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620923 tn?1452915648
COMMUNITY LEADER

  For the past yr or so, many have sent requests to get this topic on this show and the other Drs show,,.neither has done the show.....

It is a great idea, and many have tried and unless u know someone that works on the show not sure how to get them to do it.
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Avatar universal
Yeah, I'm not sure how successful we'd be.  If we think about it, think of all the illnesses/conditions/diseases out there and how many groups of people like us are trying to get their voices/conditions heard on shows etc.  Sadly, it would probably be a 1 in million shot.  
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1755089 tn?1376053555
It will be GREAT! But we will need to mention that it's not Budd-Chiari! The nurse at the ER putted that on my file last time, and when my DH pointed out that it wasnt Budd she looked at him like if he was crazy, she asked him mokingly who told him that and told him to mention it to the doctor without changing it on the file :( She didnt seems to know what it was or even care!
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1306714 tn?1327257080
I know what you mean.  I never knew neither did my family know about this Chairi until it literally hit's in in the head and make's us more aware.  More people do need to know about this.  I know I try to educate and help my family as much as possible to understand this because it is not just us who have to deal with it.  Our families are also affected.  Just like people with other illnesses.  I just know reading some of these post even more hospital's need to be more aware, then maybe they would understand we are not crazy, just want answer's.  We should all set a date and all write to Dr. oz.  maybe then it would get noticed.  There is enough of us on here to make them notice.  What do you think.  Set a date and I'll post something on his web. Maybe we could all show them our 14 inch scar's and help people realize this isn't an easy issue to deal with.
Helpful - 0
1755089 tn?1376053555
Good idea. I'm in. Give me the address (e-mail and regular one too!)
Helpful - 0
1823499 tn?1370090289
Lets all email dr oz and maybe one of us will get a response and we can all go. That would be nice to meet my chiari family :)
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1979479 tn?1330375018
The reson why Dr Oz doesnt have it on the show is because he has no idea about it and what we go thru. He is not going to do a specialunless we go to his house and demand he puts this on as a topic. CM is so overlooked for being as common as it is.
-dani
Helpful - 0
1968463 tn?1374757813
There is a group on Facebook called Chiari Malformation and they are trying to do the same thing. SOmeone there was trying to contact him, but she didnt have enough people. Anyone else on that page that is here also? Anyway, maybe we could join efforts and if enough different groups like us approach him (in numbers) maybe we would be heard/ My mom always told me there was power in numbers. *Just a thought*
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  
  I used to be on that page...I do not go on FB all that much, but over a yr ago there were several petitions and sign ups for what u wanted to see on the show...hundreds  and I mean hundreds of us sent in personal accounts of what we go thru and what chiari is...he seems to be more weight centered on his show...

Helpful - 0
1968463 tn?1374757813
That is just terrible. I wonder how the topics get picked. I mean, I have a good mind to call oprah, now that she has her own network. I do not really get on FB the way that I used to, and that page is almost non existent now. I however did meet a fellow Chiarian from Louisiana there. I invited her here, but I am not sure if she ever came or not. WOnder what it would take to make an informative/ journey/testimonial type booklet to hand out at local dr offices
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  For now, u can just ask ur Dr to contact MH and join and follow this forum....they will learn what we all go thru fast enuff : )
Helpful - 0
1968463 tn?1374757813
that is a great idea !!!!! I will definitely be mentioning that tomorrow.
Helpful - 0
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