Carries Chiari Connection
A connection for Chiarians
| Members | Join Site |
Join the team to raise awareness and find the key to living a better quality life with Chiari!
| All Members (52) |
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juanes21 Limited Member Female |
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Susan Limited Member Female |
About Me
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.
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
No
What state do you live in?
Georgia
What do you feel you need from this website?
to be involved in future awareness events |
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angela Limited Member Female |
About Me
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
I have Chiari
If you answered yes for either question, Was a Chiari Decompression performed?
no
What state do you live in?
new york
What do you feel you need from this website?
research information |
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carolyn snowwhite Limited Member Female |
About Me
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....
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
Yes Parent
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
Illinois
What do you feel you need from this website?
connection with other patients |
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drbellows69 Limited Member Male 40 years old |
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dawn isaac Limited Member Female |
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Amisha Limited Member Female |
About Me
Have you been diagnosed with Chiari 1 Malformation?
Yes
If you answered yes for either question, Was a Chiari Decompression performed?
no
What state do you live in?
Conneticut
What do you feel you need from this website?
support |
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LaWanda Limited Member Female |
About Me
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
Yes Parent
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
arizona
What do you feel you need from this website?
support |
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morganf Limited Member Female |
About Me
Hi, my name is Morgan. I have Chiari and was diagnosed at the age of 10, I am now 17.
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
I have Chiari
If you answered yes for either question, Was a Chiari Decompression performed?
no
What state do you live in?
Mississippi
What do you feel you need from this website?
connection with other patients |
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ChristaAnn Limited Member Female |
About Me
Have you been diagnosed with Chiari 1 Malformation?
Yes
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
Ohio
What do you feel you need from this website?
connection with other patients |
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Skylar's Mom Limited Member Female |
About Me
I am a 30yr old stay-at-home mom. I have 3 children. Skylar is 13, Kolby is 11 and Zackary is 5. I am married to a wonderful man who is a Police Officer. My daughter Skylar was diagnosed with Chiari about 3mths ago and had her surgery on September 30,2009. She stayed in the hospital for 9 1/2 days. She developed pnemonia immediatly after surgey and her blood pressure was dangerously low. They ended up putting her on a ventilator for 4 days. My concern is this...ever since the surgery she has right sided weakness of her arm. She is able to use it alittle, but doesnt have very good control of it. She also has scoliosis with a 54 degree curve and will be having surgery for that in 2010. I would like to get to know everyone and maybe in some way we will all be able to help one another. God Bless!
Have you been diagnosed with Chiari 1 Malformation?
No
Are you a parent or spouse of someone who has Chiari?
Yes Parent
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
Oklahoma
What do you feel you need from this website?
support |
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ruth Limited Member Female |
About Me
I found this site while doing some research on chiari. I was recently diagnosed with a chiari one malformation at 16mm. I have quite a few of the symptoms associated with this condition, and have lived with some of them for most of my life so far. It is making me "feel" better just to know that others share the same problems, and that someone cared enough to help support us emotionally.
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
I have Chiari
If you answered yes for either question, Was a Chiari Decompression performed?
no
What state do you live in?
Arizona
What do you feel you need from this website?
connection with other patients |
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Jill Huff Limited Member Female 33 years old |
About Me
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
No
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
Ohio
What do you feel you need from this website?
to be involved in future awareness events |
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Peter Limited Member Male 33 years old |
About Me
Hello,
I am working as a freelance article writer at a Youth Hostels website and travelling around the world as a backpacker. I am currently living in a La Paz hostel and will be moving to a hostel in Sucre shortly.
I will be posting news as much as i can.
Cheers,
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Chantilly106 Limited Member Female 35 years old |
About Me
I was diagnosed with Chiari Malformation Type I January 2004, and have had 3 surgeries to try and correct this. I have also had numerous tests and procedures done, along with numerous doctors and specialists, most of which who don't understand, or even know what Chiari is. Am very frustrated, and ready for this nightmare to be over with. I am still having problems with pain and other symptoms, on top of trying to find a doctor who knows what Chiari is; all of that has made me suffer needlessly.
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
I have Chiari
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
Kentucky
What do you feel you need from this website?
support |
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Nicole Hutnik Limited Member Female |
About Me
Chiarian Mom of three wonderful Chiarians. All of us have multiple related conditions, including the trifecta.
My family started Chiarians Unite with help from some amazing people ... We strongly believe in paying it forward!
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
Yes Parent
If you answered yes for either question, Was a Chiari Decompression performed?
yes
What state do you live in?
Ohio
What do you feel you need from this website?
connection with other patients |
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mattkortesMD2012 Limited Member Male |
About Me
I'm a medical student who was dxed with CM1 as a Senior in undergrad. After two years of messing around, and getting bad opionoins from ignorant physicans I finally saw a congential neurosurgeon who knew what he was doing, and detethered me as I have TCS as well. This has dramatically improved my quality of life and may have negated the need to decompress me as my CM1 herniation is mild, and I have more ventral than dorsal decompression, raising questions over its utility in improving my life. It's the devil you know vs. the one you do not! And, as a future neurosurgeon (I hope!), once the air hits your brain you are never the same.
Have you been diagnosed with Chiari 1 Malformation?
Yes
Are you a parent or spouse of someone who has Chiari?
I have Chiari
If you answered yes for either question, Was a Chiari Decompression performed?
no
What state do you live in?
WI
What do you feel you need from this website?
connection with other patients |
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mobilegourmet Limited Member Female |
About Me
I suffer from five forms of arthritis, the worst being Rheumatoid arthrtis and RSD. I have dedicated my life to helping the physically challenged as well as chronic pain suffers. I have written 2 books the first is Yankee cooking with Southern Charm and the second will be released July 2009 A coplete illustrated guide to cooking with arthritis. feel free to join my site as a member. http://mobilegourmet.webs.com/
Have you been diagnosed with Chiari 1 Malformation?
No
Are you a parent or spouse of someone who has Chiari?
No
What state do you live in?
PA
What do you feel you need from this website?
to be involved in future awareness events |
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MrsFriend Limited Member Female |
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Wendy Ward Britt Limited Member Female |
About Me
I am the mother of a five year old son with a Chiari 1 malformation. Landon has suffered from intense headaches and pain in his arms and legs for a while now. We have also noticed slight balance problems and occasional difficulty swallowing. He is scheduled for decompression surgery at McGovners Children's Hospital/Duke Medical on June 16, 2009.
Have you been diagnosed with Chiari 1 Malformation?
No
Are you a parent or spouse of someone who has Chiari?
Yes Parent
If you answered yes for either question, Was a Chiari Decompression performed?
not yet but is scheduled soon
What state do you live in?
North Carolina
What do you feel you need from this website?
connection with other patients |
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