Chiari and the effects and faces of this disorder that have changed our lives forever.

Clips to make chiari more aware to those who do not understand us or even know what Chiari malformation is.I want to help bring awareness to this disorder that effects many, as much as Ms and other brain disorders. When friends, neighbors and yes medical professionals do not know what I mean when I say I have Chiari Malformation it is frustrating when I tell them I have Chiari malformation as thousands of us do ,and instead of them answering" Oh! I know what that is I understand what you are going through", I get blank stares and long explanations . If it leads to awareness we can get more funding for a cure especialy the children who have never known anything but pain, and it's about time Chiari had been 1st discovered in the 1800's.. Please watch my small clips it's my first ,and I am not an expert I made many errors because it was through pain and frustration that I composed this and I never knew how to edit after I posted it . My wish was to help do something for us all. If you have questions feel free to email me, and also you can contact the foundations featured, together we are a family and strong we don't have to suffer in silence anymore. we can all make a diference in how people respond to us, we can even help the medical professionals through sharing are experiences they are similar but vary in many ways. Good Luck to you all on your journey an may your road be smooth not long as some of us have trudged.

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People & Blogs

Tags:

• chiari
• malformation

[TheLoralee]

I was diagnosed w/Chari in 1993,.I'm only 36 years old and I have come to terms, ..with reality,...I gotta beat it before it beats me..I can't give in to it,...I bite the bullet and deal w/the pain..Yea I have bad days,...really bad days.. but I suk it up @ go on w/life..I'm not letting this beat me,bring me down and ruin all hopes of life,...This was the hand I was dealt in life,...and I am gonna make the best of it,...I HAVE NO OTHER CHOICE!!..Good luck to you all!!...and GOD BLESS!!

[italianmomma4]

I love this video. I have Chiari and this video gets a tear in my eye everytime......

[TheDokkenozzy]

@CraftySenorita I would get a second opinion. My daughter was diagnosed with Chiari 1 Malformation at 19months old, 6mm. and was advised to get surgery, she had decompression surgery at 28months old. It has been 4 years since her surgery and now she only has migraines which she is being treated for.

[liseangel62]

Thanks for this video. We do need help. Where can we find it? Nobody seems to understand what we are going thru. Even doctors, don't know what to say.

[jeangonnella]

18 surgeries. I cant imagine having another brain surgery..in fact i won't do it. my heart breaks to hear that. How does he deal ?

[CraftySenorita]

My daughter was diagnosed today with Chiari 1 malformation, 7mm. Her doctor warned me about Internet research. She advised against surgery. She has had constant migraines with vomiting FOR FOUR YEARS. Should I get a second opinion? Is surgery really an option for her? Please help

[meltinglillies]

thank you for the video its honest and true i get to the point where i feel alone with this and when its acting up to the fullest i dont leave my house and its hard to get up and play with my kids. more people do need to know about this expecially drs and nurologist i had one tell my husband i was making everything up for attention and thank god for the chiari specialist at the u of u for believing me when i came to him for help (i go in for my decompression sep 23.)

[IneedSerenity14]

I love this video!! I watch it from time to time and share it on facebook. I feel it is the best way to make ppl who don't suffer understand to some degree. I was diagnosed April 09 and decompressed Jan 11. Still have yet to receive the benefits of the surgery but I try to stay positive. Thank you for this video. It always makes me feel understood and not alone

[Rockland19621947]

What is amazing is that even my new Allergy Dr. knows about Chiari 1...a few yrs ago they would laugh at me when I ended up in the ER with a severe occipital headache.....I tell everyone I know about this....I have lived with this but it makes me stronger by far than those that have not had to deal with the symptoms.....Peace and Love out to everyone that has this

[carrie869]

ive just been diagnosed with this ive gone two yrs with headaches blackouts and everything that no dr could explain and finaly one dr decided to run an mri on me so i start seein a neuro wesnday and i have mixed emotions im scared but im excited cause now i dont feel like a hypocondriact but im scared cause ive lost some hearin i have constant migranes on a daily bases to the point of pasin out and im 25 and i have three kids but im glad im not a hypo

[hayzi2147]

@CatalystOfFire

my girlfriend has it to breaks my heart looking at her

[BertrandofGeneva]

thanks for this video

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