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. 


Decompression surgery tomorrow

Started by Addycakes in Surgery and Recovery. Last reply by Fugu 3 hours ago. 10 Replies

So I am having my surgery tomorrow morning and I'm freaking out about getting pain relief after surgery. I have EDS and I've been on narcotic pain medication for over 10 years so I'm terrified my tolerance will be too high and won't have any relief.…Continue

CSF Leak after decompression surgery?????

Started by Bowler in General. Last reply by Jules G yesterday. 2 Replies

All,My husband had decompression surgery 10/13/15.  We really do feel he had a csf leak the PA even thought so right before being discharged but because he had no swelling or infection they said it was not.  We are 6 weeks out of surgery and the…Continue

Any fellow chiarians around new england?

Started by Manda in General. Last reply by Manda on Wednesday. 3 Replies

I am just looking for any support groups or fellow awesome folks to meet up with, exchange information, and just be there for each other. I am a newbie to this whole thing and currently dealing with the prospect of surgery and other various health…Continue

Leg weakness

Started by momoftwo in Symptoms. Last reply by Fugu on Wednesday. 1 Reply

I just recently received my results from a Lumbar MRI.  There were no major findings to account for my leg weakness.  Am I wrong in thinking that the Chiari then is accounting for my leg weakness? I do have a small Syrinx in my cervical spine as…Continue

Latest Activity

Angel left a comment for Angel
"I am awaiting a 2nd opinion from Dr. Eric Trumble in FL. My symptoms include back of the head…"
1 hour ago
Fugu replied to Addycakes's discussion Decompression surgery tomorrow
"Hi, Addycakes! Sorry you had to go through those troubles, but happy your headache is gone. Best…"
3 hours ago
Fugu left a comment for Spoobette
"Hi, Spoobette! Sorry you are developing new symptoms. Connecting with others, especially when you…"
3 hours ago
Fugu left a comment for Kathy
"Hi, Kathy! Sorting out which symptoms come from what might take a while and be difficult. Remember…"
3 hours ago

Mobile App

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

Top Content 

1 Decompression surgery tomorrow

Decompression surgery tomorrow

Posted by Addycakes on November 15, 2015

2 Hi.....having surgery in 11 days

Hi.....having surgery in 11 days

Posted by tomygirl on November 5, 2015

3 First time here

First time here

Posted by opredhatter on November 19, 2015

4 My story

My story

Posted by bakiyaraj T on November 15, 2015

5 CSF Leak after decompression surgery?????

CSF Leak after decompression surgery?????

Posted by Bowler on November 25, 2015

6 Coughing has brought on the need for surgery now I think

Coughing has brought on the need for surgery now I think

Posted by Elsie on November 22, 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

New symptoms

Posted by Spoobette on November 25, 2015 at 6:42pm 0 Comments

Got up from a sitting position today a work and a minute after the top of my R foot and entire R ankle got all tingly. About a minute later it just stopped. 

Gift Store


© 2015   Created by BensFriends.org   Powered by

Badges  |  Report an Issue  |  Terms of Service