Welcome! You're not alone.

Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Join or Create a Group

Check our Help tab above.


Since site content and usernames are google searchable, please protect your anonymity by creating a unique username.

To change your username, click here. 


All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  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.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer group.
  10. No politics, please.

Thanks for your cooperation.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.


What is Chiari Malformation?

Chiari malformation, is usually present at birth and occurs at the back of the head where the brain and spinal cord connect.

There are four types of Chiari malformations:

  • Type 1 – occurs when the base of the skull and upper spinal area do not form properly. A type 1 Chiari malformation commonly goes unnoticed until problems arise in the adolescent or adult years of life. The headaches most typical of Chiari I malformations are usually located at the back of the head, and are often made worse by exertion.
  • Type 2 – sometimes known as an Arnold-Chiari malformation, a type 2 Chiari malformation is caused by part of the back of the brain shifting downward through the bottom of the skull. it is seen in infants who are born with spina bifida and can also be associated with hydrocephalus, a condition in which there is an overproduction or lack of absorption of the cerebral spinal fluid (CSF).
  • Type 3 – occurs when the back of the brain protrudes out of an opening in the back of the skull area.
  • Type 4 – occur when the back of the brain fails to develop normally.

Children with Chiari I malformations may start to have symptoms as early as age 2 or 3. Some don't have any symptoms until they are older. Symptoms can appear any time. They may start or get worse after a trauma, physical effort or straining, such as exercising, coughing or sneezing.

Syringomyelia, common with Chiari, is a cyst in the center of the spinal cord that is filled with fluid. The cyst, also called a syrinx, can get larger and longer over time, putting pressure on the spinal cord and causing symptoms. If not treated, it may also eventually cause nerve damage.

Read more here about living and coping with CM. 


Finally had surgery

Started by Brenden in Surgery and Recovery. Last reply by Lula 38 minutes ago. 3 Replies

Took everyones advice and got my regular dr to put me on medical leave from work until I could see the neurosurgeon. I finally had the decompression surgery and its been twelve days. Im up and about now just having some balance issues and headaches.…Continue


Started by Lula in Symptoms. Last reply by Lula 56 minutes ago. 8 Replies

Why do you feel like you confused and your head feel like it swellings?

Trying to support my fiancee as best I can

Started by GoblinInventor in New Member Introductions. Last reply by Sabrina Haller Yeager 3 hours ago. 2 Replies

I am engaged to a wonderful woman who has Chiari Malformation Type 3. She is post decompression surgery, but is still afflicted with unpredictable and debilitating headaches. It is better than it was, but it still is a major factor in her life, and…Continue

Just found out I have CM1

Started by Donnya in New Member Introductions 4 hours ago. 0 Replies

Hello everyone! I am 39 and just found out 4 days ago that I have CM1. I have had headaches/ migraines since I was very young that have gotten worse over the years. Over 3 years ago I had to quit a job that I really enjoyed because of a constant…Continue

surgery 2 days away

Started by vblue73 in Parents and Caretakers of Children with Chiari. Last reply by BaltimoreBaby 4 hours ago. 12 Replies

Hello Everyone,My 18 almost 19 year old daugther is having decompression surgery on 04/30/15 at Duke Hospital in Durham, NC. We have spent the last 2 1/2 years going from one specialist to another before finally getting a correct diganosis (we had a…Continue

Upcoming Surgeries

Started by BaltimoreBaby in What's New With You?. Last reply by BaltimoreBaby 4 hours ago. 43 Replies

We know of a number of members who will be having surgeries soon-dolphinlove123tes3jenTiffanywonderwoman1006Kayla C.Please join us in wishing them peace of mind, success and speedy recovery!Your Mod TeamContinue


Started by LNJACKSON in Surgery and Recovery. Last reply by Trudy 11 hours ago. 3 Replies

It's my surgery this morning, I'm honestly quite scared but for any one else who is going through it now, just try your best to relax and just go along with it, I promise we'll be fine x

newly diagnosed, has anyone else had these symptoms

Started by millie in General. Last reply by Trudy 12 hours ago. 1 Reply

Hi everyone, I'm new to this group, I was diagnosed with chiari malformation 1 in May this year.  I was wondering if anyone else has had the same symptoms as I have.In May this year after a wonderful 16 night cruise with my sister( we left our…Continue

Latest Activity

Lula replied to Brenden's discussion Finally had surgery
"I did after my surgery but you should ask them to get you some physical therapy like I did. That…"
38 minutes ago
Lula replied to Lula's discussion Head
"Started in my early twenties with the nausea and the bad headaches. Doctor then didn't know…"
56 minutes ago
SoBummed replied to Lula's discussion Head
"Lula, you said you suffered for years before you were diagnosed, how long and how severe were your…"
1 hour ago
Lula replied to Lula's discussion Head
"I had decompression surgery done in 2013 but I suffer for years before I finally told them there…"
1 hour ago
SoBummed replied to Lula's discussion Head
"OMG Lula .... it's exactly how I feel ...like a fire pit and also lately I had severe pain in…"
1 hour ago
SoBummed left a comment for Jshan0630
"Hello Judy, I am also in the NY/NJ area and I just got diagnosed. Which NS did you end up going to…"
2 hours ago
SoBummed posted a status
"Thanks Jules ... this site has been a somewhat comforting ... just knowing that there are people out there with the same issues."
2 hours ago
Lula replied to Lula's discussion Head
"Yes I do feel like that all the time. I also feel like my head in a fire pit to some times.…"
2 hours ago

Mobile App

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

Top Content 

1 POST SURGRY  supplys


Posted by Dance mom on July 28, 2015

2 Wasser Clinic at Mount Sinai?

Wasser Clinic at Mount Sinai?

Posted by clairelf on August 25, 2015

3 Help...3.5 years post decompression having many symptoms

Help...3.5 years post decompression having many symptoms

Posted by Deena on August 23, 2015

4 Finally had surgery

Finally had surgery

Posted by Brenden on July 28, 2015

5 Trying to support my fiancee as best I can

Trying to support my fiancee as best I can

Posted by GoblinInventor on August 6, 2015

6 Greetings!


Posted by Kris on April 18, 2015

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


Community Announcements

Check the new

Chiari Info For Members tab.

Help Us Help Others

Support Ben's Friends

Bens Friends

Are You in Crisis?

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 the right phone numbers in your region.

If you are or have been in an abusive situation and need help, please call 1-800-799-7233 or visit 


ChiariSupport is a peer-to-peer network

To get support, give support.

About Blogs

Blogs are for tracking your personal journey and sharing your reflections, humor, or insights with the community. If you have questions and would like responses, please start a thread in Discussions, as your question will be seen by more people and receive more answers. 

Blog Posts


Posted by Lula on August 25, 2015 at 7:05am 1 Comment

Feeling so tired and weak for over a week and a half. All I want is energy to I don't have to struggle talking my dogs out to use the bathroom. What can I do to get my energy back.

Gift Store


© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service