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Chiari Malformation Community
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Avatar universal

Celebrities with chiari

With an estimated 300,000 + people with Chiari - how come we don't hear of more celebrities and famous people with Chiari? I know MS is speculated to have about 400,000 sufferers and we see a HUGE list of famous people with that. I do know that some first round draft pick in the NFL has Chiari and had decompression surgery and I am aware that Joan Cash (Johnny Cash's daughter). But no BIG celebrities...any of you know anything I don't about celebrities who have this????

Just good discussion...thats all
15 Responses
1336659 tn?1275893725
I think it's because a condition like MS has symptoms for all who are diagnosed with it. But with CM the majority have no symptoms or mild symptoms and  be unaware they have it.


Watch this space. My 14 year old with CM is an aspiring Actor and Singer. :-)
1 Comments
The majority of Chiari sufferers are not asymptomatic. Their symptoms just aren't recognized as Chiari often. Often, Chiari is found when looking for somt8 else. I was horribly symtpomatic all of my life, but because no one recognized the symptoms I went undiagnosed until I was 27 when they decided to look at my neck pain issues.
999891 tn?1407279676
I dont know if this statistic is an estimate or if this is the amount of people who have been actually diagnosed.  

If you ask someone do they know what MS is they will have a good idea, if you ask them about CM they will not have a clue. This is due to lack of awareness.
When the vast majority of GP's/family doctors dont know about CM then what hope have the general population of knowing....
  
Ray
1179332 tn?1297482590
Yeah..that it kind of strange..but then again, MS is a much more common disease (in comparison).

It would certainly help to have a celebrity who has CM and would bring it into the spotlight..of course, I would wish that on anyone though..

Carolyn
Avatar universal
It's strange...because my neurologist said symptomatic chiari has a prevalence of 1/1000 and MS is like 1.5/1000...both near the same. But yes as far as familiarity much different. My neuro said she thinks its because after the surgery most Chiari patients become remarkably better while MS patients become worse. She said MS is much much worse...I don't know???
2 Comments
I think the problem is the fact remains that so many Chiari malformations ARE undiagnosed.  I had trouble all of my life, and I didn't find it out until I had an MRI for what my primary suspected was a stroke.  The head and neck pain was horrid.  I was scared I did have a stroke, but I didn't - "just" Chiari ... years later, I got a severe traumatic brain injury from a car wreck.  The hospital I was taken to did Not see it on any of my imaging, even though it is in plain sight.  All of that has made headache pain terrible to deal with.  Lots of repairs still have to be made, including Chiari surgery ... sigh
When you have Chiari and are involved in a MVA it is very hard to know what to treat as we can also develop whip lash and that can add  to and impact the condition.
Many  Drs and MRI techs do not realize how Chiari can and does affect us.....so they tend to see it as an incidentail finding and not much more.
620923 tn?1452919248
COMMUNITY LEADER
Nov 10, 2007 ... The daughter of the late and great Man in Black, Johnny Cash was diagnosed a while ago with the debilitating disease of Chiari Malformation.Roseanne Cash is recovering at her home in New York City after having brain surgery for a rare, but benign condition called “Chiari Type I malformation.

I like the report, rare, but benign.,..really then y did she have surgery????
1 Comments
If that were the case, "benign" is used in the same context as "mild" brain injury.  You suffer with headaches, digestive issues, reproductive issues, and appendage problems your entire life.  Not to mention your neck hurting.   When you go through brain rehab after a traumatic brain injury (TBI), stroke, or seizure, you learn very quickly the terms 'mild and benign' are non-descript of the patient's situation.  It really is very frustrating.  I have both Chiari one and severe TBI, and I have yet to find a competent doctor :(
Avatar universal
It is strange that it's not one of the "known" conditions. I only heard about it when I was watching a medical documentary. It said that it is far more common than people think. If this is the case, why is it not checked for more often? I've had to ask specifically for the test, as when I saw the program, it was like a light switch went off!
Avatar universal
from what i understand...its not as rare now with imgaging its found by mistake while checking for other conditions. ..that report is funny.. "rare, but benign" EXACTLY...why did she have surgery then?
1 Comments
If you have noticed (or listen to country music), Rosanne doesn't sing anymore :(  ...  I am hoping she is working on getting her voice back :)  When mine was found in '05, I was told every 1 in 10,000 children were born with them in the 70's.  Upon further research, Chiari is much more common than the "experts" thought .... now every 1 in 1,00 births have Chiari, according to the research I was able to find.  Still searching, though!!
1179332 tn?1297482590
Seriously.. that's the problem...the attitude towards Chiari really needs to change. Then we would be hearing more about it..

Carolyn
620923 tn?1452919248
COMMUNITY LEADER
The only thing rare about chiari is NS and PCP's educated on this condition.
1 Comments
I wholeheartedly agree!!
1388357 tn?1280193093
Mine was totally found by accident!  I was at an orthopedic doctor because of severe neck pain with no apparent cause.  After x-rays showed bone spurs, degenerating discs and super straight neck, the next month I insisted on an mri because the pain wasn't subsiding.  I have to wonder if I got a technician (a rare angel) who was super-smart and spotted my dangle-y brain and covered more ground than she was technically "supposed to".  She had to have known about Chiari.  Why else did she cover so much more than just my neck?

Lisa
1 Comments
You lucked out!!  When mine was found in '05, the radiologist let me see everything that showed up on my MRI - I was so thankful for that!!  Where I lived, there were only 3 or 4 neurologists in the area who understood what Chiari is - in '19, I am finding a lot more people who understand what this is :)
1436969 tn?1283792724
I read that Malformation Chiari is often misdiagnosed as MS because no MRI is done to see what it really is. MY 5 yo boy has a 16mm descending tonsil and he has been shrugged off since he was 18 months old when he suffered a Take Down. No suggestion of MRI was ever made though we repeatedly expressed serious concern.
1063386 tn?1287882169
I did like that shows like house and csi and hawthorn all had patients with this disorder and. All made it out to be serious.   Maybe that is a start.  
1041839 tn?1278685446
Roseann Cash does have Chiari but she said she "doesn't like to talk about it" I wish she would it would help "us" so much.  

Supposedly George Clooney has it but he does not call it Chiari. In an interview he said his brain was "falling down"

Joanna David (English actress), Marissa Irwin (fashion model), and Chris Dugan (former NFL kicker for the Buffalo Bills) all have Chiari and speak very candidly about it. Chris even has a motivational speech on youtube about his battle with chiari

and Sean Astin backs and supports Syringo because his mom Patti Duke has it.
1 Comments
Clooney's was from a fall on the movie set Syriana in 2004 ... he had severe CSF leakage that required spine surgery ... I would venture to say it is 'acquired' instead of congenital.
Avatar universal
http://www.examiner.com/article/usa-luge-s-julia-clukey-back-on-the-sled-and-making-progress
This Olympian also has Chiari. I was diagnosed with it in March and my NS knew about it in Nov of 2011...looking at decompression surgery next month..joy joy
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I really think there are more then we r aware of.....they just r not sharing their info....so thanks for sharing what u knew about this : )

Please post ur surgery date in the surgery date thread so we can post a prayer thread for u...we like to keep all members in our thoughts and prayers and offer support.
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