Why Does Chari Get So Little Awareness?

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Why Does Chari Get So Little Awareness?

Postby Bryan » Fri May 25, 2007 8:30 pm

I have been dealing with problems with Chiari since 1970 age 13 even after getting very lucky and having surgery in 1974 which deffinately was very successful I was told little about the surgery by my Neurosurgeon then.I do consider him my lifesaver today.I was in very bad shape from age 13 to 17.
He did tell me I would have limitations in my life and he was right.In the last two years my health has declined Drastically and I have become unable to work.
Other than these Great Chiari Groups that I have learned from since May of 2006 I have seen no Awareness and had little to none myself of Chiari except NS's and a couple of Specials on the Discovery Health Channels.
Does anyone know why so little Awareness on Chiari problems.It seems to be taken so lightly?
THANK YOU
Chiari II surgery 1974 age 17 before MRI's found with Pneumoencephalogram.Suboccipital Craniectomy:Lamminectomy of C1 & C2 and Scarred Cerebellar Tonsils.
I now have Tonsillar Hernition;Syrinx and Basilar Invagination.
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Postby cash71 » Fri May 25, 2007 10:51 pm

I think its because it's so "new". You are lucky to have been dx before the advent of MRI. Most people weren't and were given some other label. Chronic fatigue, migraines, or :evil: crazy

Now that MRI as more commonplace I think the number of people dx earlier in the course of the disorder are going to rapidly increase and hopefully with increasing numbers will come greater awareness. Also b/c it is so "new" there are very few studies done and therefore there is not a lot known about sm/cm. As more studies are done and more information is uncovered about possible causes and treatments I think it will hopefully become more widely "accepted" by the general medical community.

These are just a few of my thoughts on the subject as I have often thought about this question myself.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Bryan

Postby razzle51 » Sat May 26, 2007 4:12 am

Bryan I see you made it on the board . Good to see yu again . Roz
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Why Does Chari Get So Little Awareness?

Postby Bryan » Sat May 26, 2007 7:44 am

It's good to be back on thanks Roz.I do hope for more Awareness on Chiari.It has to effect many peoples lives everyday.Especially children during there young years.My NS said I was very lucky when playing sports because of the Basilar Invagination I think? it was so long ago and I knew nothing about it then.
THANKS AGAIN
Chiari II surgery 1974 age 17 before MRI's found with Pneumoencephalogram.Suboccipital Craniectomy:Lamminectomy of C1 & C2 and Scarred Cerebellar Tonsils.
I now have Tonsillar Hernition;Syrinx and Basilar Invagination.
Bryan
 
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Joined: Fri May 18, 2007 7:12 pm
Location: Evansville,Indiana

Postby keggler » Sat May 26, 2007 9:53 am

Hello and welcome---I think it is they know more in the medical community than they let on. They don't like to treat pt's with so many symptoms and also so many that are educated. Demand a MRI and get treated.Basicly a Insurance nighmare---most of us look like there is nothing wrong with us.....And most of us refuse to be labled crazy and sent home to suffer.......

There are many peope out there that have this....they just don't know it yet.

Later...Jerry in Carolina...
"You are what you eat----and-----You are what you think"

"Be Good To Yourself"
.
CM1-S/M-Basilar Invagination
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Postby jjames » Fri Jun 01, 2007 9:41 pm

several of us have tried numerous times to get someone to help us. We even thought that a celebrity backing would bring some much needed attention. We e-mailed Ellen, and Oprah, and even Montel. As far as I know, no one ever heard anything....it is very sad. Our condition may not be as common as others, but that doesn't make it any less important.

jjames
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JJAMES---

Postby keggler » Sat Jun 02, 2007 1:28 pm

Don't ever give up hope----I lived many years sick worked everyday,then got to where I couldn't anymore...but I stoill try to stay busy doing something.Never quit dreaming---of a cure---a new med---a new procudure----Friends you haven't met yet......

Later....Jerry in Carolina...
"You are what you eat----and-----You are what you think"

"Be Good To Yourself"
.
CM1-S/M-Basilar Invagination
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Postby donbr » Sat Jun 02, 2007 3:31 pm

Hi
Jerry is right dont give up hope nobody knows whats happening behind closed doors and that could bring more awarness a cure or a sustainable treatment something that gives a person his/her life back to normal.
Don
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Postby kathymichelle » Sat Jun 02, 2007 5:39 pm

Jerry and Don thanks for the great words of encouragement. Today is a day where I feel semi-hopeless...not a good feeling.

Like we are so totally alone in our pain, our condition.
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Postby dizzy2 » Mon Jun 04, 2007 3:27 pm

Hi kathymichelle, I've been dx'd w/cm1. I've had my hopeless days myself. I get that way when my symptoms are prominent. I've been about 2 weeks w/no sx so I feel good. Able to feel a sense of normalty. I do get breathing issues at times where I feel I need to take a full breath often and need to fake a yawn to complete it. But it comes and goes. I've even been able to ride my bike with my kids and do some gardening lately. It feels so good to do normal things. But then I have days where I just need to rest. I'm sure I will have those days again and feel like you do, "hopeless". I'm really trying to focus on less stress and limiting myself when I feel this way. I love coming on the board and talking because this is where I get my encouragement. I am so thankful for this place to come to where we can get understanding for what we are feeling. I have my days where I just cry for hours at a time. I just want to get to the chiari institute so I can talk to Dr.'s who know what is going on. My nl just thinks I should take xanax 2x a day and not to worry about it because my herniation is only 7mm so he says it's mild and not to worry, just go home and adjust to my symptoms. That I'll just have to live with this unless I want brain surgery. Boy, that makes me so frustrated :x .

Well, I just want you to know that you are not the only one. I am right there with ya on how you feel. I think that maybe if we keep are stress levels down to a minimum, we can keep the flare ups from being so constant. We will always get them, for what ever or how ever they come. I don't even know. I could be having the best week and then "Bam" we get hit with something. :lol: I just have to laugh because that's how it is for me.

Well, I'm sending you a hug because I know how you feel. Hope you have brighter days than cloudier ones.

Lidia
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chiari & sm awareness

Postby prism » Fri Jun 08, 2007 5:18 pm

What do we know of that is being done to spread awareness? And how can individuals ( without money :wink: ) help? prism
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