+118 votes
Help spread awareness, Chiari Malformation
Description
This is my little sisters story about her journey with a rare brain disease
9,921 views Dec 23, 2014

Please log in or register to Comment this Media.

SaraEdward 5,170 points
We should spread the awareness.
Share it friends.
+15 votes
Dec 23, 2014
desireemasterson 310 points
I have Chiari...I can't image being a young kid or child with it. I hope Ellen does a show so people can know more about. And that we are not crazy...we really are sick even if you cant see it. <3 Desiree Masterson of Idaho
+12 votes
Dec 23, 2014
Dave Boies 310 points
This is a terribly frustrating defect. Even after a successful surgery to increase the space available for the cerebellum by shaving off part of the skull and C1 and/or C2 vertabra, it is still possible and more important COMMON, to suffer from it's symptoms - 24/7/365 Chiari headache, loss of feeling or tingling of extremities, balance and cognative issues. My 18 year old daughter was diagnosed in 2012, had Decompression Surgery in January 2013 and whose headache returned in March of 2013. She has had the headache since March of 2013 and began passing out randomly starting in the spring of 2014. After spending a week in the hospital to try to determine the cause, the doctors told us that she is passing out because her body is shutting down due to the pain, the depression associated by dealing with chronic pain and anger also associted with Chiari Malformation.
+11 votes
Dec 23, 2014
anonymous
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF) the clear liquid that surrounds and cushions the brain and spinal cord to and from the brain.
- A little information for everyone about Chiari!
+10 votes
Dec 23, 2014
Aimee Zemanek 110 points
Chiari Malformation is a structural defect of the skull, not the cerebellum.  It would be helpful if you use a source more accurate than NIH {which is 20 years behind on research}
AlisonBalian 4,550 points
Hey thanks for sharing this too.
ts
It can be caused by whiplash too
anonymous
i  have  chiari  malformation too  i was   diagnosed  in 2009  i was  28  years old.i  have cyst  on  my  spine   too.  i also  have m.s. it  is  very  hard when  you  are a mother
+7 votes
Dec 23, 2014
Alee Danielle Moore 310 points
I am a 22 year old single mother with Chiari Malformation. It IS real. We DO suffer. And we NEED awareness!
+6 votes
Dec 23, 2014
dawn.deloria 270 points
My daughter suffers with Chiari and related disorders.  She is 17 and endured 30+ surgeries that began when she was 6.  The lack of awareness is a frustrating thing and bringing that awareness can help so many people.  I can say we have met so many chiari patients in our journey and the strength, courage and resilience they have is amazing.  Our bodies may fail us,..but it's time the medical/educational community stops and listens.
+6 votes
Dec 23, 2014
Briana
I am 26 and have Chiari as well. WE NEED A CURE PLEASE SHARE THIS VIDEO!!
+5 votes
Dec 23, 2014
Chassity Clark
How do I vote?  I'm 34 yrs old symptoms since child hood wasn't diagnosed until I was 25 yrs old ,  ACM has severely affected my life , I also have 2 family members with it , I would love for Ellen to share awareness! Every time I tell people they look confused & unaware even some Drs & many nurses!
Mettler 790 points
Click on green arrow on toP left corner of page. If you're registered. Must register first
anonymous
Register Chassity
Rhonda
6 years ago my husband, age 36, was diagnosed with Chiari MF.  After years of suffering with equilibrium issues and unusual nerve ending buzzing, a very attentive MRI Radiologist identified the defect.  Within 3 months, Sean underwent the decompression/fusion surgery to fix it.  I am happy to say that after only a few months, the symptoms subsided and Sean was able to stop taking the various medicines he had been subscribed over the years.  It was not something our friends and family knew anything about and we spent a lot of time explaining the symptoms and the dangers of it being underdiagnosed.  Our doctor, Craig VanDerVeer, told us that if we would have waited much longer, Sean would have likely become paraplegic due to the pressure being applied to his spinal cord.  Purple Ribbons are the color for Awareness and September is the Month to promote.  Here is a great resource to share and become informed:  http://www.conquerchiari.org/index.html
+5 votes
Dec 23, 2014
Kathie
I also have Chiari and I am 43. I was just diagnosised in June 2014. This is a horrible disorder. I wouldn't wish this on my worst enemy. Ellen please do a show on this for us to put the awareness out there. From what I read George Clooney has this and if we could get well know people to step forward and help us get this disorder out in the public then maybe the doctors would be more updated on the sign for diagnosising us. Help us get the word out.
+5 votes
Dec 23, 2014
Mater Potater 400 points
Keep sharing yall!! WE CAN DO THIS :0)
+5 votes
Dec 23, 2014
Judy Bliss Kirk 250 points
I to have Chiari type I. And I deal with it everyday. It real gets to me when someone so young has it. Because it is genetic I pray everyday that neither of my boys have it! We need to raise awareness and find a better solution then surgery just to make it easier to live with.
+5 votes
Dec 23, 2014
zprhead 250 points
19 yrs with Chiari Malformation Debilitating symptoms the last 4 years and 11 neuro-surgeries later
+5 votes
Dec 23, 2014
Sarah Marie Ingold 250 points
I have Chiari and so does my best friend. Spread awareness.
+5 votes
Dec 23, 2014
SarahJane 240 points
one of the hardest things about Chiari is the lack of awareness within the medical community. misinformation & misdiagnoses are way too common leaving people in search of help for, in my case, 19+ years. we need awareness not just in the public arena but in the medical community as well.. yes Chiari does cause a whole host of symptoms doc (see we usually end up educating our doctors) & there is no cure...
spread the word
+5 votes
Dec 23, 2014
Dori Coldwell
CHIARI AND EHLERS DANLOS has devastated our family,these genetics disorders took our daughter at age 30, and now her brother whose surgery journey is just beginning 8 years later, thank you for helping to raise awareness, educate our doctors, medical schools and emergency rooms to recognize the symptoms!!
zona mcgee
My son Ryan McGee passed away from Chiari August 11th 2013. He was 20 years old. We desperately need awareness.
+5 votes
Dec 23, 2014
bramfarm 250 points
Two of my children and all three of my sister's children have Chiari.
+5 votes
Dec 23, 2014
SRowe 250 points
For those who are not aware of Chiari Malformation. It is a condition where the brain is crowded at the opening of the skull where the brainstem fits thru. People who have Chiari have an issue of the brainstem not having enough room in the opening, or the brain is actually tring to squeeze thru the opening. This stops the flow of Cerebral spinal fluid and creates a "bubble" or a "cist" in the spinal cord from pressure build up. Essentially, it destroys  the spinal cord from the inside out, causing everything from memory issues, numbness, temperature intolerance, circulation issues, capillary issues, paralysis, and even death. This is just the tip of the iceburg as they say.
 I myself am a survivor of this. I never for the life of me, ever thought i would be in this situation. Ive gone from being a good runner, raced motocross, mountain biked, raced BMX in my younger days, to having a hard time just walking. We need to spread the word on this horrible, horrible condition. I believe here is agreat place to do so! God bless and thank you!
+5 votes
Dec 23, 2014
SaraEdward 5,170 points
I actually don't even know about this thing..
+4 votes
Dec 23, 2014
Melie Carlisle 510 points
Spread awareness!
AlisonBalian 4,550 points
Actually, I don't even know about this...
+4 votes
Dec 23, 2014
Halli
That is why awareness needs to be spread... So many of us suffer from Chiari ;(
Muhammad Sajid 39,070 points
Yes awareness has to be spread. Lets share this guys .
AlisonBalian 4,550 points
Everyone has to know about this. Nice video. I appreciate that...
anonymous
Yes we need to spread this awareness. I never heard of it either till our 9 yr old had her surgery in May2014!
+4 votes
Dec 23, 2014
wg4y 230 points
I have Chiari, my mother does too. We just found out in October my 3 year old boy (then 2) has it also. I believe my 10m old does too, but he hasn't been checked out yet. It's a horrible condition and it's so hard to find dr.'s that believe we aren't crazy. It's even harder making family/friends see we aren't overreacting and we REALLY feel this horrible.
+4 votes
Dec 23, 2014
anonymous
God Bless your family! It is a painful invisible disease and I pray they find a cure. My son was diagnosed at 20 months old and has been recently diagnosed with EDS which is more painful. Some days he can't walk and the pains are unbearable. I believe doc's need more schooling to keep up with Chiari. Take care.
Sam-Kristen Fox 230 points
I have it as well
+4 votes
Dec 23, 2014
Caryn Leclerc 350 points
I have Chiari also. Spread awareness.
+4 votes
Dec 23, 2014
Caryn Leclerc 350 points
I have Chiari also. Spread awareness.
+4 votes
Dec 23, 2014
anonymous
ACM (Arnold-Chiari Malformation) is an issue near and dear to me. At 38, I lost nearly everything. However, children are dying from a lack of awareness and proper diagnosis. Please help us.
+4 votes
Dec 23, 2014
anonymous
Me and my little sister have a Chiari too!
+4 votes
Dec 23, 2014
Jnnfrwlls1 230 points
I was diagnosed and decompressed in 2008. I still suffer from symptoms and every day is a struggle.
+4 votes
Dec 24, 2014
Christine Millar 230 points
We need more awareness. Chiari malformation effects children and adults in many ways.  It causes horrible life altering,  dream crushing Conditions.
+4 votes
Dec 24, 2014
Bobbie 220 points
I too have Chiari, diagnosed at age 46.  Looking back I am certain I lived with symptoms starting around age 23 or so.  But at age 46 the pain in my neck, back of the head, trap muscle and down arm became so terrible I could not tolerate it despite every measure taken.  Finally the answer came, but it was a difficult journey, one filled with doubt about my pain and sx by others.  The surgery made things worse in some aspects, no change in most, and better in one regard.  I had to stop working ... I had worked so hard to become a nurse, taking the 'long' route :-/ (I started college as a divorced, single mom of a 2 yo and commuted an hour each way daily.)  Chiari is a tough disorder to deal with for many of us; Chiari is poorly funded; Chiari is poorly understood due to lack of research; and most people have never heard of it, though it affects nearly 300,000 people yearly.  Thank you for considering this disorder for an awareness campaign Ellen.  YOU ROCK!
+4 votes
Dec 24, 2014
Nicole Moran Watson 230 points
Makayla you brought tears to my eyes :) I have 2 children with Chiari, a son Reid age 8 & my daughter Regan is 15 & was diagnosed this spring. We also travel to see the wonderful & amazing Dr. B. & she also was a softball girl. You two have a lot in common :) I pray for a successful surgery for you, you are in wonderful hands :)
+4 votes
Dec 29, 2014
Telisha White 230 points
I found out when I was 16 years old that I had Chiari Malformation. We seriously need to get the awareness out there! WE need a cure for this!
+4 votes
Dec 29, 2014
kckcapps 230 points
I had never heard of Chiari until two years ago when my nine year old daughter was diagnosed after being misdiagnosed for years. In fact,  her neurosurgeon found Chiari on a previous MRI from 2005! The radiologists and pediatric specialist had no idea what they were looking at so we were not told nor were the results followed through with a referral to a specialist. She is now twelve and as a result of being misdiagnosed with spinal bifida and Chiari she now has developed syringomyelia, tethered cord, and scoliosis just to name a few. We are still in the process of being tested for the many associated disorders such as Ethlers Danlos syndrome, Mast Cell Activation disorder and dystonia. We travel many states away for treatment due to the lack of specialist in our area. In fact,  When she has to go to the ER or general practitioner I have to take a binder with all medical records and explain to each medical professional what her diagnoses! Most often than not they disregard anything that they do not understand or did not learn in medical school.  How great it would be to visit a doctor who understands! !!!!! Thank you for raising awareness for all of our sakes! !!!!!!!!!
+4 votes
Dec 30, 2014
Allison Fabela 210 points
My 8yr old is suffering from Chiari. We never know what each day will bring. When he has a good day, he fights sleep, afraid tomorrow he will wake in pain.
+3 votes
Dec 23, 2014
anonymous
Poor thing :( My 10 year old feels the same :(
Aimeeh 200 points
Thank you for spreading awareness! I was diagnosed earlier this year and went through what felt like a whirlwind trying to understand what Chiari was.
+3 votes
Dec 23, 2014
Judy Kirk, From PA
We really need this to go viral! I to have Chiari I and it effects your whole life!
+3 votes
Dec 23, 2014
anonymous
So glad to see this! Please bring awareness to a condition without a cure. I'm in a hospital right now because of this condition and its symptoms. Lets do this!!
+3 votes
Dec 23, 2014
Kathy
I was diagnosed about 7 years ago. It's a terrible condition, that leaves you feeling so helpless, mainly because there is so little help out there for us. I'm an American living in Canada, with no specialists here. If I was to have the decompression surgery, I'd want a specialist and it doesn't look like they'll be sending me to see one any time soon. It changes your life, but some of the changes can be good, like looking at life through a whole new pair of eyes. We need awareness, we need support!
+3 votes
Dec 23, 2014
V. Brill
Ellen, Please invite this young girl to your show to promote awareness of Chiari Malformation and its symptoms and treatments.  Thank you. V. Brill
+3 votes
Dec 23, 2014
R. Roderick
This is a chronic, life-changing condition.  More people need to be educated about Chiari Malformation, including doctors!
+3 votes
Dec 24, 2014
Patricia Ferland Wel 200 points
My daughter has Chiari. Please help raise awareness for this horrible disease!
+3 votes
Dec 24, 2014
anonymous
Spreading awareness for you and me...and the rest of the Chiari World!
+3 votes
Dec 24, 2014
Tracee Hinrich 220 points
I have Chiari Malformation. Was decompressed March 2013. There is no cure. Surgery is to slow progression and try to lesson the symptoms, some people have to have multiple surgeries. Please We need help to spread awareness. There are more than you know with this.
+3 votes
Dec 24, 2014
Kristin 380 points
My mother died from this and I almost lost my life in 2010. It has taken me several years to find a doctor who could even pronounce this disease. Definitely needs awareness.  Thank you!
+3 votes
Dec 24, 2014
anonymous
I have Chiari Malformation. Symptoms started when I was a teen. Took 30+ years to be diagnosed. Most people have never heard of this condition and it is a condition that needs awareness. The medical profession needs to be educated.
+3 votes
Dec 24, 2014
Mettler 790 points
https://www.facebook.com/AKS430/posts/940007336018047 this is the original video. I know some are unable to view on this site if using phone. If you'd like to view video using phone try that link. I hope it works. LETS KEEP SPREADING CHIARI AWARENESS #chiarimatterstoo
+3 votes
Dec 24, 2014
Makayla Parker 210 points
Cmon keep liking it!
+3 votes
Dec 25, 2014
anonymous
We should spread awareness.
+3 votes
Dec 25, 2014
Ken O.
I was diagnosed with Chiari Malformation in late 2010 and had the first of four brain surgeries June 2011. This is a debilitating condition. I can not longer play tennis or golf and it is challenging to work a full day.
+3 votes
Dec 26, 2014
anonymous
My son had chiari and it's been a journey. I had never heard of it until they told me I had 3 weeks to prepare for brain surgery because he had chiari. He was 14! Never in my life would I wish anyone to go through what we have. He is 17 and we still have issues!
Joseph Felt
We really need to get the word out more and more people are getting diagnosed with this disease everyday and I tell you CHIARI sucks
+3 votes
Dec 27, 2014
jandord 210 points
Our granddaughter has Chiari. She's 19 now and she had her decompression surgery on 12-12-12. She still has her headaches but they are nothing like they were.
+3 votes
Dec 27, 2014
anonymous
Yes, it needs to be made more aware of. My Son and Myself have this Disease as well as several other Diseases. I pray that they will find a cure for it, as it is overtaking our lives as well as all the other Diseases that come along with it.  My Sons has Allergies, Severe Migraines, Everyday Headaches, Asthma, Level III Heart murmur that just got worse and is now considered as Congenital Heart Disease and has been taken off most sports,
can not have certain Medicines, and no Caffeine. He is on a Heart Medicine. He was Diagnosed with Arnold Chiari Malformation when he was just 6yrs old and is now 13 going on 14 in a few months. It is very hard on me seeing this, especially now since his heart got worse and they have taken sports away. No child should be robbed of their childhood. They are suppose to be out having fun, and enjoying life. Not inside wasting away. Not even a Adult should have this disease, as there are hundreds and hundreds of symptoms that come along with it. I my self suffer from it as well as fibromyalgia, severe migraines and was just diagnosed with degenerative disc disease. As a parent this is hard to watch your child suffer and just wish that you could do anything to help him, and is extremely hard when you, yourself are suffering from pain as well. This really needs to be made aware of, as it is a disease that can not be seen from the outside, only the inside and many people do not believe that we suffer from it and do not believe the pain that comes with it.
+3 votes
Dec 29, 2014
Another Chiari sister
We totally need to raise awareness  in the medical community and beyond.  Way too many people are diagnosed with this debilitating condition after irreversible damage has been done.  Ellen - I beg you to do a story on Chiari that includes Teresa stewart Taft aka Momma Socks.
+3 votes
Dec 29, 2014
pvancise 210 points
Good job Makayla and Miranda!!! It is all about awareness.
+3 votes
Dec 30, 2014
poohstefan 220 points
As someone who has chiari , it is a disease that needs awareness. No one knows about it, even the doctors that attempt to treat you. After surgery your not cured and are not even guaranteed relief of symtoms but its the best they can give you at this time. Chiari needs money for research to help us effected by this as so many of us suffer. Help us spread the word!!!!
+3 votes
Dec 30, 2014
anonymous
Please spread the word by doing a show! I too have Chiari (as well as POTS) and had never heard of either until a couple of years ago. I kept going to doctors for my symptoms and was looked at like I was crazy. Several missed it on an MRI, I could've been diagnosed a year earlier if only the doctors had known about Chiari. There are so many symptoms and everyone is different! There needs to be awareness so doctors know about it and also research for possible treatments and a cure.
+3 votes
Dec 30, 2014
anonymous
I also have Chiari,  was diagnosed in 2003 decompressed 2004   suffered many years as a child with blackouts, balance issues, major headaches, and pain. Symptons have returned 4 years after surgery.   My son was diagnosed a year after me, he has not been decompressed yet cause his symptons are not major yet so drs wont touch him
+3 votes
Dec 30, 2014
anonymous
I don't have Chiari but as a syringomyelia patient, it's kind of required knowledge. My condition is most often a direct result of Chiari. We need to find a cure for both of these disorders... if anybody wants to know why, just take a look at this pretty little girl who just had her young life shattered by a disorder she was born with. We don't want these children with Chiari to end up dealing with the damage of syringomyelia as well. Information on both disorders is available at asap.org and csfinfo.org. Thank you.
+3 votes
Jan 18, 2015
Jamie McClaskey 210 points
I have CM type 2 with Syringomyelia. I was told that people born with Spina Bifida are born with it but I had never heard of it until 2003 when I was told I had it and needed the decompression. I had the surgery at the end of 2004. It helped some of the mild symptoms but I still have headaches everyday and with the pain the syrinx causes- sometimes I can't get out of bed. Sometimes I feel like people are sick of hearing about my problems so when something new pops up or something they've never heard of, they think I'm making it up or blowing it way out of proportion. I feel like I can't talk about with family or friends because they either say they know exactly how I feel or they try to outdo my problems and say theirs are worse than mine. OR they just don't believe it.
+3 votes
Jan 18, 2015
anonymous
-  This is my 18 year old daughter who is also a Chiari Warrior- she will be having her second brain surgery in April or May. Just like this young lady -Chiari tries to steal her life but she too is a fighter who wants people to be aware of this terrible condition.
+3 votes
Jan 19, 2015
Melie Carlisle 510 points
Ellen, as devastating as this disease is to thousands - We'd be willing to spin it to be funny "brain coming out of our skulls" haha for a moment just to have awareness on your show. Then we could truly talk about how it has ruined our lives, will ruin our children's lives, their children's lives if we can't find a platform like MS, breast cancer, ALS. We have a handful of doctors who are experts in the field, the rest can't even pronounce the word. We are dismissed by the medical community. People are losing their lives due to the disorder or suicide because it is unbearable pain. Children are losing mothers or fathers, mothers and fathers losing their children, families being torn apart, in financial ruin, careers, jobs lost. It is absolutely indescribable the stories I've heard from Chiarians, watch my good friends deal with & all so undeserving. Myself - I've lost everything but I have my husband and most importantly my children. For them, I beg of you ...please help. It doesn't have to be but 5 minutes but those 5 minutes will change our lives forever. Awareness will bring us resources for education, research, surgical technology, allow the experts in the field teach & educate other doctors. Then we can all dance.
+3 votes
Jan 19, 2015
anonymous
we need to spread awareness.....even for the Drs!  they need to obtain and be aware too!
+2 votes
Dec 25, 2014
HottieScottie 200 points
My 15 year old daughter suffers from this.  Ellen please help us spread awareness. Many Doctors have little knowledge of this condition.  Spreading awareness not only would help with faster diagnosis, but help friends and family understand a condition they cannot see.
+2 votes
Dec 29, 2014
anonymous
Something I have been battling all my life, Please spread awareness so that even Doctors can be aware also.
+2 votes
Dec 29, 2014
rachs11 190 points
Sending prayers your way, you are a Chiari Warrior! I also have Chiari as well as a host of other diagnoses but even after 12 surgeries I am still here and still fighting strong. I wish you nothing but the best!
+2 votes
Dec 29, 2014
anonymous
best of luck with your surgery , never give up! xo
+2 votes
Dec 29, 2014
anonymous
My son has Chiari and was decompressed at the age of 20 months and it changed our world forever. After his brain surgery he didn't talk, and barely walked so he received early intervention. We learned to sign as our only communication with him. It has been 9 years and a long road of specialized services. He has been recently diagnosed with EDS ( Ehler's Danlos Syndrome) which is a connective tissue disorder, where your tissue disconnects from your body. very painful disorder. He has picked up PT and OT again as exercise is the best for this disorder. Some days his legs just give out, but he always puts a smile on his face like  nothing is wrong. I am an advocate for my son and a co-chairman for a Chiari Walk that we participate every year to raise awareness. I will do anything to help find a cure. Spread Awareness!!
+2 votes
Jan 1, 2015
anonymous
Where is everyone from? I am from Rochester,NY
+2 votes
Jan 1, 2015
arikalea 240 points
I was diagnosed with Arnold Chiari Malformation at the age of 25. It all started with really bad migraines, losing feeling on certain parts of my body, seeing silver stars frequently, etc. It is so hard to explain to everyone else what is going on and sometimes you feel like a weirdo, so you just keep it all to yourself. I hope this helps raise awareness and God bless anyone that lives with this.
+2 votes
Jan 13, 2015
Sylvie Abrams 210 points
We need awareness for this serious neurological disorder. I have this as well. I was not diagnosed until I was 51. Please raise awareness. There is no cure.
+2 votes
Jan 15, 2015
anonymous
please help us raise Chiari awareness!!
+2 votes
Jan 18, 2015
Ms311girl 330 points
I have complex Chiari, have had 2 surgeries with more to go. I fight each day through chronic pain, fatigue, muscle spasms, neuropathy in all limbs, debilitating headaches. Usually have 4-5 doctor appointments a week. It's a serious neurological disorder that desperately need awareness  I'm a mother of two and it pains me everyday knowing that I possibly passed this to them. If anything, awareness for our children so they don't have to suffer like we do
+2 votes
Jan 18, 2015
Wendy Chiari Warrior 190 points
Please please help spread awareness for the Chiari malformation video. I bet you've never heard of it, most haven't even some doctors. It's frightening and scary, I should know I collapsed on Nov 20'th 2013 right after coming home from work and still in uniform. I was unable to see, walk, talk, numbness in my face, hands, feet and loud crashing sound in my ears. I had brain surgery on March 17'th 2014. They removed part of my cerebellum and a piece of my scull.  Please watch the video and help to spread the word about this horrible disease.
+2 votes
Jan 18, 2015
anonymous
Www.chiariHelpLine.com visit and call for more info about this very complex disorder which affects me and my three children. It's larger than anyone knows..
+2 votes
Jan 18, 2015
Terry L Anderson 190 points
I have a friend that suffers from this disease and it's a minute to minute painful journey please spread the news for awareness of chari & singramalagia.
+2 votes
Jan 19, 2015
kathrynchiari 220 points
Thank you for posting this!  Chiari Malformation needs as much attention as we can get!
+2 votes
Jan 19, 2015
anonymous
I suffer as well and would love Ellen's help. We need this to become nationally known so we can be helped. We have so many serious issues come up and when we go to the hospital no cone can give us answers or even help us and that's not fair. It's so scary and depressing when you body is falling apart and there are not any doctors that can help or even comfort you, it just makes things so much worse when you go to the er and they Tell you it could be the chiari or just something else, we don't know...
+1 vote
Jan 19, 2015
anonymous
Chiari Awareness. I have it too!
+1 vote
Jan 19, 2015
Maya138 170 points
We need awareness and education.  We need a cure.
+1 vote
Jan 19, 2015
PegMc 230 points
Thanks for helping to share awareness about "our" disease. Stay strong, brave and never give up your dreams!
+1 vote
Jan 19, 2015
Spamelajw 170 points
Please help us Ellen!!!!! Chiari
+1 vote
Jan 19, 2015
kiwi_chick 170 points
Chiari and its associated diseases are so mis understood and so deadly.  I suffer from many of the same illnesses as this girl and cannot get proper help from one doctor.  Please spread awareness, it is a matter of LIFE and DEATH for us.
+1 vote
Jan 19, 2015
Pigkiller 170 points
Would love to see Chiari featured on your show!
+1 vote
Jan 20, 2015
deandrahowell 280 points
Can totally relate!  Our daughter was 15 when she was diagnosed with Chiari and had her decompression surgery a few months later.  She is 16 now and has had to give up dancing - something she loved!!  She had been dancing since the age of 3.  Hopefully Ellen will do a show to help raise awareness among the medical community and the general public.  People look at our daughter and think she looks fine - they don't understand how much pain she is in everyday!
+1 vote
Jan 20, 2015
anonymous
terrible condition which needs more recognition and research! My daughter is 15yrs old and we are in Australia, finding it difficult to even find dr's that have heard of Chiari. really hate seeing her suffer, and reading how many people have suffered so much
+1 vote
Jan 20, 2015
anonymous
That was super! Good luck on your surgeries and I hope you have a speedy recovery. Thank you for bringing national awareness. Maybe more will understand what we Chiarians go through. Deb
+1 vote
Jan 20, 2015
anonymous
Three generations in my family have a chiari malformation.  The fourth generation is showing signs as well unfortunately.  My daughter was diagnosed as a toddler, but was thought to be asymptomatic.  We later realized that wasn't true.   In 2004 she had her first surgery for chiari. In the next four years she had over 20 more surgeries.  She is now over 30 surgeries.  It is a scary situation when even a teen age patient knows more about her condition than the medical doctor.  Please help raise awareness!  It is all in our head- but not in the way some doctors mean.
+1 vote
Jan 20, 2015
Donna Ruffing 170 points
Please give ( Arnold ) Chiari and all of the people afflicted this opportunity for awareness. There are so many people suffering 24/7 and so little help. Ellen PLEASE lend us your voice and your support. From small babies to the elderly precious people are suffering with little to no relief. Please consider us. Please help us bring awareness to this little known disease.
+1 vote
Jan 20, 2015
Katie Klaehn
We have two chiari warriers.  Our middle child has been on this journey since age 2 and suffers from several co- conditions.  She lives every day with chronic pain, severe headaches, and tries to keep a smile on her face.  She has been symptomatic from birth and has never experience a day without head pressure or pain.  Our youngest just got diagnosed and she is 4 years old.  She is dealing with the severe headaches also and also finds a smile every day.  This is hereditary and we need more doctors to get educated and also be willing to work on our little warriors instead of being afraid of them or excluding them.
+1 vote
Jan 20, 2015
anonymous
Thank you for helping spread awareness. Chiari doesn't get enough. Most doctors are ignorant to the symptoms of the malformation and are quick to diagnose as other conditions. Chiari is often misdiagnosed as fibromyalgia, M.S., scoliosis, lupus and other conditions.  Doctors need to be trained to Look beyond the norm. It's their ignorance that is letting our chiari sisters and brothers die. No one knows they even have it until it's too late.
+1 vote
Jan 20, 2015
anonymous
My Daughter Meghan was diagnosed with Chiari Malformation, syringomyelia and scoliosis when she was 7years old had her first decompression surgery 1 year later (brain surgery) and joined the Chiari Warriors that day. It's a long hard road I'm lucky to have my mother her grandmother who has now taken her and my oldest full time so she can get her to all the doctors appts specialists and all her other needs. Be strong warriors we will keep fighting.
+1 vote
Jan 20, 2015
Brenda Surin
Thank you posting this!! I have Chiari and there is no cure. But maybe with research they can find a way to prevent it and make our daily lives more livable.
+1 vote
Jan 20, 2015
anonymous
Happy to see this post.... I have Chiari Malformation
+1 vote
Jan 20, 2015
jen 160 points
please spread the awareness <3
+1 vote
Jan 21, 2015
anonymous
We Need A CURE!Please
+1 vote
Jan 21, 2015
Laura
Chiari simply put...... sucks. This is a horrible, painful and down right inhumane illness. No one should have to suffer the way we do. Invisible illnesses are 100% misunderstood.  We look semi normal on the outside but I can assure you if you were able to crawl into my skin you would hop out less than two seconds later. Its absolutely horrible.  PLEASE keep the awareness going.
+1 vote
Jan 21, 2015
Amy Harrington Lamb 240 points
I have too much brain to contain as well and had to undergo the surgery.  I had to give up tennis which I loved very much.  Thanks for spreading awareness.  Gentle hugs.
+1 vote
Jan 21, 2015
Nita Paddack 170 points
Thank you for giving a place to spread awareness! My daughter, Jessica, was diagnosed at 18. Now at age 32 (11 surgeries later) her life is far from what she would have hoped. So much of the story in this video could be her own. Dr. Bolognese has helped her so much, but she continues to have daily pain and difficulty in many areas. Life is a struggle, but she knows that there are many with Chiari & other problems who are much worse. She takes each day as it comes, and is thankful for the good ones and does the most she can, when she can.
+1 vote
Jan 21, 2015
anonymous
Fellow sister in chiari here. 1 in every 1,000 people is diagnosed with Chiari. There is no cure and the symptoms can be debilitating. For some people, chiari can be life threatening.
+1 vote
Jan 22, 2015
anonymous
Chiari needs a voice.
+1 vote
Jan 24, 2015
anonymous
for Melie!
+1 vote
Jan 25, 2015
Kalola8291 160 points
My 19 year old daughter had a 5 1/2 hour Chiari brain surgery July 2014 with Dr. Neil Feldstein of Columbia Presbyterian.    Ellen, we could use your help raising awareness.  We didn't know the signs for a few years.......help us to help others....
+1 vote
Feb 3, 2015
Devond828 230 points
Hi everyone, I am 9 and I have Chiari. I would love for Ellen too pick this video. People go through a lot with chiari
+1 vote
Feb 24, 2015
Devond828 230 points
Hi everyone, I am 9 and I have Chiari. I would love for Ellen too pick this video. People go through a lot with chiari
0 votes
Feb 24, 2015
Sebastian's mommy 105,080 points
this illiness isn't #funny and we need to #raise #awareness #hope #faith and #believe and you can do everything. #blessyou.
0 votes
Apr 20, 2015
0 votes
Apr 20, 2015
Sebastian's mommy 105,080 points
#god loves you very much. You are #amazing. Let's #raise awareness together
0 votes
Apr 20, 2015
Sebastian's mommy 105,080 points
#prayers #youareloved # livestrobgandcarry on
0 votes
Apr 21, 2015
Sebastian's mommy 105,080 points
#support the cause
0 votes
Apr 23, 2015
Brigid
My best friend had chari and had to have not one but two surgeries for the samething.  The second time because the bone grew back. There were many complications with the second surgery she was only 10 and had a small stroke and other life threatening complications. She kept on fighting anywhay. She's actually a triplet and one of her sisters has a non complex not surgical needed chiari her mom has it too. And one year after her second surgery she went to her doctors to get another scan and it turned out a bone grew protecting where her Chiari was so it can no longer come back this was a miracle pretty much for her her doctor even said that she never needed to be seen again by him because he had no way of doing this and no scientific way this could have happened of course there are still many things she can't do she can't have intense physical activity she can't jump on a trampoline or jump off a diving board or flip because of certain risks but
 she's still a very strong person
0 votes
Oct 3, 2015
Analyze
I suffered since a child, progressed with age, finally diagnosed at 36. I found that moving around, walking, exercising, paleo diet, natural eating has improved my life about 75%. I never looked or felt better at 51. Also treating TMJ (Dr Berstein Tempe, AZ) helped A LOT! Dr Ruzzi (rheumatologist) Scottsdale AZ, with my breathing to help my heart.
0 votes
Jan 10, 2016