Help Us Fight Chiari Malformation

My son and his fight with this horrible birth defect

If you would like to make a donation to help these kids please visit:
http://asap.org/donation.html

Category:

Education

Tags:

• Arnold-Chiari
• malformation
• Syringomyelia
• donations

[Davesrose]

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]

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.

[jumpingjackkitty]

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.

[Davesrose]

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.

[lolliepop283]

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

[Davesrose]

This is the only video I have made for my son, but thank you for watching.

[mfreeny222]

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...

[13dixie13]

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

[mfreeny222]

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.

[Coolcow6]

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

[zookeper]

Thank you for that my son was diagnosed today!

[felicityreann]

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]

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.

[Ychiari75]

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 .

[URCNFUN]

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!