thanks for sharing my daughter have Chiari Malformation also...she have had 2 surgeries and she is doing good...May GOD continue to shine his light on and all the Chiarians out here...
im 14 years old and i have chiari malformation i have had it for a while because i was sick (i had a disease ) when i was a toddler and the doctors thought i just had strep throught it turns out that i was deathly ill.all i had were some head aches dizziness and blury vision occasionally but i just ignored it cuz i thought it was natural but they found out i have chiari and i had brain surgery in october of 08' they thought i was better but i passed out and was rushed to the ER last year
My daughter was diagnosed with Chiari Malformation in October 28, 2004 had the decompression of the skull on November 4, 2004. She had to go thru Occupation Therapy for 6 weeks. She did well for awhile, but her headaches came back and they (doctors) were treating her for Migraines. But in the last 4 months her headaches are unbarable and recently(in the last 3 weeks) she had a CATSCAN and MRI and it shows that the Chiari need to be revised(she now is 14) she is so scared to go thru it.
hi everyone, my mom passed away this last october because of this disease. I want everybody to know that this disease is very real, she went through dozens of surgeries before dying at the age of 44. She spent nearly every day in pain and had numerous trips to the emergency room. I know what every family with a relative with this disease goes through.
She was very active in helping people with this, if you google "Arnold Chiari Malformation Kelly Morrill" you will see everything she has done
My thoughts and prayers go out to your family. Im very fortunate I've had one of my children checked and he doesnt have it thankfully. I totally understand your frustration with doctors. I really dont think they understand the level of daily pain you live with.
I have Arnold Chiari malformation as well. I was diagnosed when I was 18 but was symptoms free. When I turned 31 all hell broke loose. I went through numerous doctors that told me I was crazy and there was nothing wrong with me. Then, I found someone to listen to me. I wen to Dr. David Frim at University of Chicago. I had brain decompression surgery in June 2008. I am much better, I still have neck problems and spinal cord compression but all together my quality of life is better.
hello my name is yvonne and i hope ur son is doing better everyday. I have chiari and eds and had the chiari surgery as well as cervical fusion. My doctors at the chiari institute are helping me through this everyday and u are so right more doctors need to be informed. for many year i believed that my illness was in my mind. and wasnt diagnosed until 3/2008. I hope u do find understanding doctors
like the ones i had at the Chiari institute because they do understand the pain .
what a beautiful son you have! I got diagnosed with Chiari in Feb...Going to have my decompression surgery on May 6th at Vanderbilt Medical Center in Nashville,TN. I also have a lesion on my brain stem that they've gotta find out if its cancer or not...thanks for posting this video!
Thank you all!!! I wish the doctors would take this more serious my son is most of the time in a lot of pain. and there is so much he cant do because it brings hi more pain. I would never wish this on anybody but I sure do wish people were more understanding.
Thank you all!!! I wish the doctors would take this more serious my son is most of the time in a lot of pain. and there is so much he cant do because it brings hi more pain. I would never wish this on anybody but I sure do wish people were more understanding.
Your son is so great! My prayers are with you and your family that he dont need any more surgeries. I just found out that my 2 year has the worst case that her doctor has seen of Chiari. She has her surgery March 25, 2010. I hope she comes out good.
my son is 26 and 12 weeks ago had surgery ...the surgery went well but the next day he developed breathing problems and was rush to the nccu in addenbrokkes hospital cambridge uk.. he had a seizure which was caused by a build up of fluid and has left him with a kinked brain stem.he's now at papworth hopspital cambridge uk to wean him off the ventilator.he has minimal movement in his limbs the next step is rehab..i didn't know if there is anyone out there who has had these types of complications.
First of all what a beautiful baby you have and what what a lovely tribute you have put together on this video. I am also a fellow "zipperhead". I had my surgery in April,2002,but am very symptomatic again. I 'd like to leave a message to BlakeFox95 and others...unless your have vision with built in magnetic resonance imaging (MRI) all "chiarians" would look "normal" Good luck with your son and God bless .
How is he doing? Is he better, do you think the surgery has helped, is he having pain? My Grandson has just been diagnosed with this, please respond soon, I need help, I desperately need someone to tell me there is hope. God bless your little boy.
so sorry I havent got back to any of you, yes he is doing fie, we have been very busy, moving, and starting new job, ect. I do hope everything went well for you. Ryan still has headaches pretty bad, and it worrys me, but so far no more surgery's yet. keep paraying, you all will be in ours.
i had my first surgery for my chiari my freshman year of high school and my second one my softmore year of high school. I spent a week in icu both times but recovered quickly. Now i am perfectly fine no effects or anything. The only bad thing about it is i cant play contact sports.
Hmm Maybe my post didn't go through:) I am sorry for everything he's been through.. Is the same boy as the one on the other video? The videos are very similiar. Sending best wishes to your son!
That was very well done. My son also has Chiari and the surgery for it. I know what you are going through. What is the name of the song and the artist?
thanks for sharing my daughter have Chiari Malformation also...she have had 2 surgeries and she is doing good...May GOD continue to shine his light on and all the Chiarians out here...
mfreeny222 7 months ago
im 14 years old and i have chiari malformation i have had it for a while because i was sick (i had a disease ) when i was a toddler and the doctors thought i just had strep throught it turns out that i was deathly ill.all i had were some head aches dizziness and blury vision occasionally but i just ignored it cuz i thought it was natural but they found out i have chiari and i had brain surgery in october of 08' they thought i was better but i passed out and was rushed to the ER last year
13dixie13 1 year ago
My daughter was diagnosed with Chiari Malformation in October 28, 2004 had the decompression of the skull on November 4, 2004. She had to go thru Occupation Therapy for 6 weeks. She did well for awhile, but her headaches came back and they (doctors) were treating her for Migraines. But in the last 4 months her headaches are unbarable and recently(in the last 3 weeks) she had a CATSCAN and MRI and it shows that the Chiari need to be revised(she now is 14) she is so scared to go thru it.
mfreeny222 1 year ago
hi everyone, my mom passed away this last october because of this disease. I want everybody to know that this disease is very real, she went through dozens of surgeries before dying at the age of 44. She spent nearly every day in pain and had numerous trips to the emergency room. I know what every family with a relative with this disease goes through.
She was very active in helping people with this, if you google "Arnold Chiari Malformation Kelly Morrill" you will see everything she has done
Coolcow6 1 year ago
Thank you for that my son was diagnosed today!
zookeper 1 year ago
My thoughts and prayers go out to your family. Im very fortunate I've had one of my children checked and he doesnt have it thankfully. I totally understand your frustration with doctors. I really dont think they understand the level of daily pain you live with.
felicityreann 1 year ago
I have Arnold Chiari malformation as well. I was diagnosed when I was 18 but was symptoms free. When I turned 31 all hell broke loose. I went through numerous doctors that told me I was crazy and there was nothing wrong with me. Then, I found someone to listen to me. I wen to Dr. David Frim at University of Chicago. I had brain decompression surgery in June 2008. I am much better, I still have neck problems and spinal cord compression but all together my quality of life is better.
felicityreann 1 year ago
hello my name is yvonne and i hope ur son is doing better everyday. I have chiari and eds and had the chiari surgery as well as cervical fusion. My doctors at the chiari institute are helping me through this everyday and u are so right more doctors need to be informed. for many year i believed that my illness was in my mind. and wasnt diagnosed until 3/2008. I hope u do find understanding doctors
like the ones i had at the Chiari institute because they do understand the pain .
Ychiari75 1 year ago
what a beautiful son you have! I got diagnosed with Chiari in Feb...Going to have my decompression surgery on May 6th at Vanderbilt Medical Center in Nashville,TN. I also have a lesion on my brain stem that they've gotta find out if its cancer or not...thanks for posting this video!
URCNFUN 1 year ago
Thank you all!!! I wish the doctors would take this more serious my son is most of the time in a lot of pain. and there is so much he cant do because it brings hi more pain. I would never wish this on anybody but I sure do wish people were more understanding.
Davesrose 1 year ago
Thank you all!!! I wish the doctors would take this more serious my son is most of the time in a lot of pain. and there is so much he cant do because it brings hi more pain. I would never wish this on anybody but I sure do wish people were more understanding.
Davesrose 1 year ago
Your son is so great! My prayers are with you and your family that he dont need any more surgeries. I just found out that my 2 year has the worst case that her doctor has seen of Chiari. She has her surgery March 25, 2010. I hope she comes out good.
lbfranklin81 1 year ago
How can we fight as parents when no one listens to us, and are kids pain!! I just want a doctor to help my not functing son before its to late.
jacob7130 1 year ago
i have chiari malformation i had it all my life but im 20 now my doctor is thinking about the sugery
hannahgrer19 2 years ago
my son is 26 and 12 weeks ago had surgery ...the surgery went well but the next day he developed breathing problems and was rush to the nccu in addenbrokkes hospital cambridge uk.. he had a seizure which was caused by a build up of fluid and has left him with a kinked brain stem.he's now at papworth hopspital cambridge uk to wean him off the ventilator.he has minimal movement in his limbs the next step is rehab..i didn't know if there is anyone out there who has had these types of complications.
mightyboosh666 2 years ago
First of all what a beautiful baby you have and what what a lovely tribute you have put together on this video. I am also a fellow "zipperhead". I had my surgery in April,2002,but am very symptomatic again. I 'd like to leave a message to BlakeFox95 and others...unless your have vision with built in magnetic resonance imaging (MRI) all "chiarians" would look "normal" Good luck with your son and God bless .
SBflogirl 2 years ago
How is he doing? Is he better, do you think the surgery has helped, is he having pain? My Grandson has just been diagnosed with this, please respond soon, I need help, I desperately need someone to tell me there is hope. God bless your little boy.
jumpingjackkitty 2 years ago
so sorry I havent got back to any of you, yes he is doing fie, we have been very busy, moving, and starting new job, ect. I do hope everything went well for you. Ryan still has headaches pretty bad, and it worrys me, but so far no more surgery's yet. keep paraying, you all will be in ours.
Davesrose 2 years ago
whats wrong with him? im confused he seems normal
BlakeFox95 2 years ago
Hello Mr. Hope all is well, look after yourself. Think you're great.
cjk100 3 years ago
i had my first surgery for my chiari my freshman year of high school and my second one my softmore year of high school. I spent a week in icu both times but recovered quickly. Now i am perfectly fine no effects or anything. The only bad thing about it is i cant play contact sports.
swimmer19982011 3 years ago
i have this, you can go for surgery. i'm going for mine in the summer.
CanUHearUs 3 years ago
just 2 days ago i was diagnosed with Chiari Malformation 1. i understand, best wishes. i know things will be alright.
Iolcus 3 years ago
Hmm Maybe my post didn't go through:) I am sorry for everything he's been through.. Is the same boy as the one on the other video? The videos are very similiar. Sending best wishes to your son!
God Bless
lolliepop283 3 years ago
This is the only video I have made for my son, but thank you for watching.
Davesrose 3 years ago
That was very well done. My son also has Chiari and the surgery for it. I know what you are going through. What is the name of the song and the artist?
sarriaki 3 years ago
Mark Schultz - He's My Son
Davesrose 3 years ago