We are patients and survivors of Chiari (types I-IV), here for your support.
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Events
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Jamie (Lyanna)
June 3, 2013 at 7am to June 11, 2013 at 3pm – The Wisconsin Chiari Center
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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
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Rare Genomics Podcast
The first run of our podcast on genetic disorders with our partner, RareGenomics, was a resounding success! You can listen to a recording of this podcast below, plus some bonus material from Dr. Perlman as she answers more questions about ataxia!
Part 1:
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Forum
how to make school aware
Started by Danielle Brinson in General. Last reply by chiari in virginia 55 minutes ago. 6 Replies 2 Likes
How do I go about informing the school of what my son is not allowed to do because of his surgery. So afraid one wrong move while playing he will get hurt. we are almost four weeks post op. any suggestions.
Do Chiari symptoms always worsen?
Started by Patty in General. Last reply by ajmattingly 1 hour ago. 6 Replies 2 Likes
Is it possible to avoid surgery all together and remain with just annoying symptoms that are not to the degree surgery would be required in the future? Trying to avoid getting cut on as I have found that outcomes seem so variable.Continue
Thankful, and a little info..
Started by Doug Burke in General. Last reply by Mandy 1 hour ago. 3 Replies 1 Like
Hi everyone. This has been such a valuable site to me! Thanks to all for sharing your experience here, especially the recent stuff on Dysautonomia and it's relationship to Chiari. The more dialogue out here the better. I have been pretty quiet…Continue
driving post op
Started by lesley in General 1 hour ago. 0 Replies 0 Likes
how did everyone wait to start after surgery? I'm still nervous about drivingContinue
What is ChiariSupport.org?
Welcome to ChiariSupport.org. We're glad you found our Community site. The purpose of this community is for people affected by a Chiari Malformation (types I-IV) to provide each other with emotional support. We are patients helping patients. We also have some parents/family members of those who suffer from Chiari Malformation.
What can you do on ChiariSupport.org?
1. Share your story on "My Page".
2. Start a new discussion on "Forum" and "Discussions".
3. Welcome new members with a comment on their page Welcoming Them To the group.
4. Share your photos/videos that inspire you or help you cope with living with Chiari Malformation.
5. Comment on other discussions and get to know your fellow members, make friends and get the support that WE ALL need.
Latest Activity
ModeratorAbby left a comment for norska
chiari in virginia replied to Danielle Brinson's discussion how to make school aware
ajmattingly replied to Patty's discussion Do Chiari symptoms always worsen?
ModeratorMandy replied to Doug Burke's discussion Thankful, and a little info..
ModeratorMandy replied to Ben Munoz's discussion What do you like to do to occupy your time with?
ModeratorMandy replied to Anglyn's discussion Symptoms worse during TOM in the group Heart to Heart Group for Women
Lyn727 replied to Lyn727's discussion Recovery IssuesTop Content
| 1 |
no surgery?Posted by jessica on May 16, 2013 |
| 2 |
7 1/2 weeks post opPosted by sunny429 on May 7, 2013 |
| 3 |
Wedding to go to..need advice :)Posted by Ellie S. on May 20, 2013 |
| 4 |
Do Chiari symptoms always worsen?Posted by Patty on May 18, 2013 |
| 5 |
Second surgery with duroplastyPosted by hopeful_in_del on May 14, 2013 |
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Do you feel Misunderstood?
Do you feel Misunderstood?:Wonderful post by Abby on the ADD Support site. It starts with:
“Some times in life, we come in contact with those who just don’t get it or understand what we struggle with. I have many times. I guess the ones that hurt the most is family members who sweep it under the rug and hide it. Being misunderstood goes for other folks too, who struggle with other afflictions. “
"I am here because my daughter is here and i want to support her and learn more about chiari."
“I am here because my daughter is here and i want to support her and learn more about chiari.”- Member of Chiari Support Group
"Thanks for a wonderful site, and for all the information, I look forward to growing and learning..."
“Thanks for a wonderful site, and for all the information, I look forward to growing and learning more about Chiari here.”- Member of Chiari Malformation Support Group
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how to deal
Posted by Danielle Brinson on May 20, 2013 at 11:48am 0 Comments 0 Likes
Surgery Soon
Posted by fierywolf1981 on May 14, 2013 at 10:55pm 4 Comments 0 Likes
Well my fellow chiarians I finally got the word from my doctor today that my surgery has been approved and it's 2 weeks from today, needless to say I am scared out of my wits. I know many of you have gone through surgery and I was wondering what…
Continue
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