Welcome! You're not alone.

If your family has been affected by Chiari, consider Chiari  Support your second home.


1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Does Your Pain Have You Considering Suicide?

First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK
for members in the United States, or for international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.




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.


Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

(Co-Founder of Ben's Friend)

What is Chiari Malformation?

Arnold–Chiari Malformation, or often simply known as Chiari Malformation, is a malformation of the brain. Chiari malformation consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow. The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. Person with Chiari Malformation often experienced headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis.

Read more from this link.


Lost, sad, depressed and feel trapped

Started by Lyndsay in General. Last reply by Abby 4 minutes ago. 27 Replies

Since this is a safe place to share with people who have felt my pain. I am in a place where I don't know how to take care of my self financially. I don't have unemployment ( not elligible in my state). I can't get Medicaid in my state till January…Continue

surgery recovery for decompression

Started by Rebecca in General 6 minutes ago. 0 Replies

What has been the range of recoveries? I meet with my neurosurgeon soon. Debating on whether I should do surgery or not... I'm scared

Join Our Chiari Support Group. Connect With Others Like You.

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Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

Abby replied to Lyndsay's discussion Lost, sad, depressed and feel trapped
"Wonderful support given Jessica.  Well said."
4 minutes ago
Rebecca posted a discussion

surgery recovery for decompression

What has been the range of recoveries? I meet with my neurosurgeon soon. Debating on whether I…See More
6 minutes ago

Abby replied to Nykki's discussion I feel so STUPID!!!!
"I guess we are a lot alike, I like it all too. We sound more like sisters, sister."
10 minutes ago
Rebecca left a comment for Rebecca
"Thank you I have so many questions I'm meeting with a neurosurgeon soon"
11 minutes ago

Top Content 

1 Anyone have a person who thinks your faking?

Anyone have a person who thinks your faking?

Posted by RoseMommy15 on January 29, 2015

2 rock bottom, alone and want to die

rock bottom, alone and want to die

Posted by jessica on January 26, 2015

3 Chiari surgery in older patients

Chiari surgery in older patients

Posted by rrhsunc on January 28, 2015

Let's Keep It Nice & Clean

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  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
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  7. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.

Thanks for your cooperation.

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.


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Blog Posts

Rough Morning

Posted by Rese Hull on January 30, 2015 at 9:28am 4 Comments

Thankfully I work from home and I'm working from bed today. Feeling a tad dizzy and the back of my head feels like something sharp is trying to push its way through my scull. Have discomfort into my neck and shoulders too. Advil doesn't help,…


Just Diagnosed

Posted by Rese Hull on January 29, 2015 at 4:45pm 4 Comments

Just got my official write up after my MRI.

The cerebellar tonsils tip is located at approximately 13 mm below the foramen magnum. They have peglike morphology, consistent with Chiari I. There is crowding of…


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