Carries Chiari Connection

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Hi all

My name is Ben Smith and I am Australian.

I am passionate about a wide range of things including sport, music, arts, politics, internet, gaming and the list goes on ;)

I work in IT and also have several business interests including a Wedding Souvenir business in Europe called Your Wedding.

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Hello fellow Chiarian's ! I'm Juanita I have 2 beautiful daughters and a wonderful husband, we live in Cincinnati,Ohio. I started having severe symptoms May 28,2010 and it felt like I was having a stroke! I work with a group of Internal Medicine doctors so I have seen a lot from the patients and them. I was told I had a stress induced migraine, I begged to differ after 4 wks of a nonstop headache, head pressure, double vision off and on  and numbness and tingling in the right side of my face, arm and nose. I demanded an MRI and hear I am 2 months later diagnosed with CM1. 

Hello I have three wonderful children and four grandkids..   I was told I had chiari one malformation in May, 2010 with a 9mm herniation..I had surgery on April 22, 2010.

I was diagnosed with Chiari 1 malformation in november 09 by an othoapedic surgeon that I was reffered to . I was then  reffered to my first nuerosurgeon Dr. Tien Ngyen , he wanting to put me in surgery 2 weeks after my consultation with him . I wanted to get a second opinion done because i didnt feel comfortable with what he wanted to do with me . He wanted to cut the tail off of my brain stem . That didnt sit well with me , so I did some resurch and found Dr Robert Jackson a well respected nuerosugeon from the fellowship of mission hospital . He requested for me to have a contrast MRI done a week before my scheduled surgey march 9, 2010 . Things got real complicated after that . He wanted to see me in his office to talk to me and said he was advised by his fellowship to reffer me to UCLA . He said that I have a few issues that are there besides the chiari . He also said he had never seen a case like mine ever . I had to fight with my medical provider for almost two months to finally get a one time contact for UCLA . I am finally going  to have a consultation this tue may 11th to see Dr. Holly . I am 28 yeard old , i am a mom to 3 kids and I adopted my boyfriends 15 yr old son . My boyfriend has a reacurrence of Sarcoma of the bone and tissue . He has been battling with it since he was 23 and hes 34 now . We are both sick right now and our familys dont show hardly any support with what we have to go through . I am just trying to stay strong and keep it together but I admitt Im scared for the both of us . Ive wanted more than anything is for my family to show that they care and want to be there for us . They are acting like cause ive lived this long with it that its not that bad . They say that im blowing everything up with my condition . I had to final except that there not to going to be there for me when I needed them the most .

I am a 35 yo mother of twins. My husband and children mean everything to me.  I was diagnosised with Arnold Chiari when I was 34 but had symptoms of it for several years prior.  I had my decompression surgery in May 2009.

I am 39 years old. I live in Georgia. I was diagnosed in 98. I also have MS. I started having problems after I gave birth to my Daughter in 1990.

My daughter Megan has Chiari type 1.  Had decompression surgery in November 2009 at Univ of Chicago with Dr. Frim.  (He is absoulutely the most wonderful in my opinion). 

 Megan has severe Central Sleep apnea caused by the Chiari and a host of other nuerological/cognitive issues as well.  We are just in search of a cure like many others! This is a very difficult illness and hard to watch her suffer, not having many answers.  Since her surgery, her eyesight has improved, and her sleep apnea is better by 50%.  Just had her 3 mos. follow up and MRI and the decompression took, we just are hoping the cerebellum/brainstem continue to work their way completely back.  Her brainstem was pretty smashed/compressed and our hope is that it is still healing and will continue to heal....