Chiari Malformation

Arnold Chiari Malformation

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46 Comments

Reply Heather A Wrightsman
10:52 PM on November 22, 2009
Thank you so much for your website. You gave me more insiteful information that will be very helpful to educate my fellow classmates. I am a Junior in The Respiratory Care Program at YSU and giving a presentation in my Comparative Health class about Chiari Malformation. I just learned of this disorder(s) a few months ago by accident. An LPN where I work has Type 1 CM and just started to talk to me about it; She gets severe migraines. So, I decided that my future RRT classmates and I needed to know more about this malformation that causes respiratory problems, difficulty swallowing, and sleep apnea.
Again, I just wanted you to know you are making a difference in this cause and making people aware. I now am interested in getting involved in some of the Chiari events!

Thank you for your time and God Bless,

Heather Wrightsman
Reply patti
04:03 PM on October 23, 2009
MY DAUGHTER ASHLEY WAS DX IN SEPTEMBER OF THIS YEAR WITH CHIARI MALFORMATION, SHE JUST WENT THROUGH SURGERY ON OCT.12TH. SHE IS DOING BETTER, BUT SHE IS STILL A LITTLE WEAK. I DID NOT KNOW ABOUT CHIARI MALFORMATION UNTIL WE FOUND OUT SHE HAD IT. I JUST WANTED TO LET YOU KNOW I THINK THIS IS GREAT WHAT YOU ARE DOING TO TELL OTHER PEOPLE ABOUT IT. THANK YOU FOR WEB SITE.
Reply Jessica
10:57 PM on October 12, 2009
Hi. My mom was diagnosed with Arnold Chiari Malformation Type II a few years ago. She may not be my child, but I feel the pain you all do....she's my mom. I want to thank you for all that you guys do to get the word out there! I am currently trying to organize something in my little town. Please pray for her! I am praying for all of you!!!!

God Bless!
Jessie
Reply Tammy
09:47 PM on September 14, 2009
My son was dx with chiari when he was 2 like Julia, my son has a mri for speech delay. the doctors told me the same thing not related. He is now 4 the doctors say there is no need for surgery at this time. I am going to get checked out for I am experiencing headaches and blurred vision and numbness to the arm with other symtoms. I am learning more and more thanks for all of you.
God Bless,
Tammy
Reply Julia Byrne
11:08 PM on August 07, 2009
My 4 year old was just diagnosed with chiari 1 malformation. He had a MRI because of his speech delay (apraxia) and this is what they found. The nurse I spoke with said there is no connection between the chiari 1 and his speech, but the more I read I am beginning to think otherwise. My son like Matthew is involved in the Help Me Grow program in Darke county. We began the program when he was 2. He has overcome alot of behavioral problems since we began this journey and finally says mama and a few other words. I asked to be reffered to childrens in Cincinnati. I am not familiar with any of the doctors only that this surgery is preformed there much more than Dayton childrens hospital. Any helpful information please email me.
Reply Aly Evans
12:41 AM on June 22, 2009
I just wanted to thank you for everything you are doing to get awareness out! I am a 19 year old and i just had surgery for my Chiari on June 6th. I am doing so much better and better every day.

God Bless You,
Aly
Reply natashajewell
04:02 PM on May 05, 2009
My name is Natasha, my 2yr old son has chiari. he will be having surgery in june 2009. I have done my research on this symptom and hearing other stories have really helped
Thankyou,
If any one would like to e-mail and chat about this pleae do so at natashajewell5@aol.com
If anyone has experienced this and would like to give me advice and support.
Reply Shelli Gentry
08:21 PM on March 04, 2009
Hello, My daughter , Sydney also has chiari she is 21/2 yrs. old and has had 3 decompressions. We see Dr. Crone at Cinn. maybe we can talk sometime I would like to ask you some of the things that sydney does and see if you go through any of the same things. please feel free to email me sometime. Oh yeah we live in Vandalia ohio just north of Dayton.
Reply Rebecca Young
03:08 AM on March 02, 2009
Hello! My daughter, Rachael also has Chiari as well as Syringomyelia. I am glad to have found your page, but so very sad that your family is dealing with Chiari.

I am member on ASAP as well as WACMA. I hope to see you on the boards or support groups.

Take care, and may the Lord's blessings be upon you,
Rebecca Young
Reply Sue
10:35 AM on February 24, 2009
Hi my son is 10 and has hydrocephalus since birth. Hes waitieng for a spinal op for scoliosis and that has been dealyed because they have just realised he has chiari which needs to be "corrected" first. We're in the UK and have tpo go and see his neurosurgeon soon so I'm busy researching!
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