Welcome to our Unique Virtual Community: a place to share, learn & Support each other because Together We Are Stronger (R). JOIN US!

Our Mission:

To share, learn and support those affected by Syringomyelia (SM), and Chiari Malformation (CM) while educating the public in hope of discovering a cure.

Subscribe & Help Build our Community!

Please click on the Subscribe button to Subscribe to our Syringomyelia & Chiari Network, and help connect those affected with Syringomyelia & Chiari Malformation around the world. Membership to the site is Free - however, the cost to maintain the site is not. That is why we have decided to offer our members the opportunity to become contributing members through subscription for the small contribution of $15.00 per year. As a contributing member, you will receive: Awareness Wristbands, Brochures, Thank you Letter, Banner on personal SM/CM page, Access to missed online Support Group Meetings & more. For more information about our Subscription or give a donation please <click here>

Thank you for your support! 


Town of Ajax, Ajax Civic Award (Adult) 2014 winner Carion Fenn.

Spinal Cord Injury (Ontario) & University Health Network (UHN) Patti Dawson Award. 

Abilities Awards: Advocacy Award 2014

Town of Ajax Accessible Award Town of Ajax selected our Founder, Carion Fenn, for the Accessibility Community Award for 2013. Shawn Collier, Regional Councillor presented Carion Fenn with the Accessibility Award.


SM & CM Awareness Products

Wristbands <Click Here> 

T-Shirt: <Click Here> 

Cards: <Click Here>

Order your products today and help support our causes. 

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Rogers TV- Talk Durham Nov. 27/13

Debra Hutchison (Host Rogers TV- Talk Durham), Nancy (CFSCN Member), Carion Fenn (Founder), Carion Fenn Syringomyelia & Chiari Network), & Kellie (CFSCN Member).

Talk Durham - Rogers TV- Channel

Debra Talked to Carion, members of our social  network (NancyKellie), & Callers including Jamie McDonald, Sue, Harlen & Christine about the issues faced with living with Syringomyelia & Chiari Malformation. We will have segments available online soon. The response was that the show was very informative, and a great resource to help educate others. Click on the thumbnail below to view videos. 

A full copy of the show can be ordered by clicking the below link: 

Rogers TV Dub Request (Click here)

MP Chris Alexander & Carion Fenn

Carion Fenn(Left), Founder of Carion Fenn Syringomyelia & Chiari Network with Chris Alexander, Canada's Minister of Citizenship and Immigration & (MP) Member of Parliament Ajax-Pickering at the Chris Alexander MP's Fall Fete September 22, 2013. 

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What is Syringomyelia & Chiari Malformation?

Syringomyelia (SM) (Sear-IN-go-my-EEL-ya); also known as SM, is a Syrinx (also known as a tubular filled cyst) that forms inside of the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the center of the spinal cord.

Chiari Malformations (CM) (Key-Ar-ee-mal-for-MAY-shun); are structural defects in the cerebellum, the part of the brain that controls balance. When the “tonsils” of the brain stem fall below the base of the skull, it cuts off or blocks the flow of Cerebral Spinal Fluid that runs between the brain and the spinal cord. 

Latest Activity

Member (SM)
Dee Yugovich commented on Lynda Williams's blog post Neurosurgeon visit
"I'd suggest you appeal so your insurance will pay for that MRI!  That's…"
6 hours ago

Subscriber (SM)
Jill McLaren left a comment for karen boemler
"Happy Birthday Karen from all of us here at Carion Fenn SM/CM Social Network! Many Best…"
9 hours ago

Subscriber (SM)
Jill McLaren left a comment for Brian Murphy SM/ACM
"Happy Birthday Brian from all of us here at Carion Fenn SM/CM Social Network. Many Best…"
9 hours ago

Subscriber (SM)
Jill McLaren left a comment for Amanda Ehrlich SM
"Happy Birthday Amanda from all of us here at Carion Fenn SM/CM Social Network! Many Best…"
9 hours ago

Want to know what's happening? Follow Carion Fenn on Twitter @carionfenn

New Article: News Advertisers

Volunteering has made Fenn top Ajax citizen
Article by Keith Gilligan, News Advertisers. Our Founder Carion Fenn won the Town of Ajax highest honour: Ajax Civic Award. 


Please subscribe to our Network to help build our community, increase awareness in hopes of finding a cure. 

Help keep us going with our 2015 Together We Are Stronger Campaign. 

Blog Posts

Neurosurgeon visit

Posted by Lynda Williams on October 1, 2015 at 10:21pm 2 Comments

I had my first offical visit with a NS who has formally diagnosed me with a syrnix.  The physician assistant I saw for my back missed the whole thing and when I noticed it on the MRI he told me nothing to worry about fortunately I have a medical…


I have a question for those with CM that had the surgery. Did you test well on the Neurological exam? The one were they check your reflexes,eyes, etc? Thanks.

Posted by skyeomalley on September 28, 2015 at 8:26pm 0 Comments

I have a question for those with CM that had the surgery. Did you test well on the Neurological exam? The one were they check your reflexes,eyes, etc? Thanks.


Syringomyelia, Gimp'n Ain't Easy

Posted by Michael Doc Davis on September 27, 2015 at 2:43pm 1 Comment

Nothing is easy about Syringomyelia. So let's fight hard but have a little fun and stuff while we do it. -- Michael Doc Davis http://syringowhat.com/syringomyelia-gimpn-aint-easy

Second surgery

Posted by Lauren Cavanaugh on September 26, 2015 at 4:07pm 3 Comments

I had decompression surgery of the syrinx at C2/C3 (T shunt) on August 31st. This is my second surgery the first was 10 yrs ago for CM and SM. this has been a difficult recovery, painful muscle spasms, numbness problems with balance when walking etc… Continue


Itchy 3 Replies

I was wondering because it is driving me crazy does anyone go through intense intching like from their legs to their arms to almost everywhere. It comes and goes but when it comes it stays a while

Started by Ashley Matos. Last reply by Deanna Empey 18 hours ago.

Advice about falling and if my symptoms are telling me something 1 Reply

I am writing this because i just am frustrated by the lack of concern for what i had happened and the fact that I should be getting home help. It is a little long but please read this so i can at least feel I am okay to wait til i see the new…Continue

Tags: pain, falling

Started by Becky Smith. Last reply by Jill McLaren on Thursday.

update on me 1 Reply

update on me, physical therapy is not so good on my left leg, water therapy does help  my balance some. but left leg is weak, hardly no feeling from knee down, starting too lose it my knee also. after therapy jm in wheel chair a couple of days, what…Continue

Started by Betty Corey. Last reply by Jill McLaren on Thursday.

swallowing 13 Replies

I have an issue with my swallowing and by ny throat i feel something there. The swallowing seems to be in my chest where my syrinx is along with a swollen disc i am assuming by where it is difficult. the feeling in my neck is like something is…Continue

Started by Becky Smith. Last reply by Becky Smith on Wednesday.

Top Discussions 

1 Itchy


Posted by Ashley Matos on September 18, 2015

2 Don't trust Doctor

Don't trust Doctor

Posted by Betty Corey on September 5, 2015

3 update on me

update on me

Posted by Betty Corey on September 30, 2015


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Proclamation Received

Town of Ajax             (Mayor Steve Parish)
City of Toronto           (Mayor Rob Ford)
City of Oshawa          (Mayor John Henry) 
City of Markham        (Mayor Scarpitti)
City of Pickering        (Mayor David Ryan) 
Town of Oakville       (Mayor Rob Burton) 
Syringomyelia & Chiari Malformation dates July 17 and September formally recognized by the Town of AJAX, On Canada Mayor Steve Parish for the first time in Canadian History in 2013. 

Carion Fenn Foundation

Carion Fenn Foundation is a Non Profit Corporation, we are thankful for the support of the Patti Dawson Award, making it possible to have a foundation that will help provide support around the world, help increase awareness about Syringomyelia & Chiari Malformation. 


Petition to the Government of Canada and Members of Parliament: 

We are in the process of petitioning The Government of Canada and Members of Parliament to recognize our Syringomyelia & Chiari Malformation Day July 17 and the Month of September Federally:

We had the opportunity to collect signatures which was a great success and we thank those who helped us collect signatures. We thank MP Chris Alexander's office for their help and guidance in getting our petition presented to The Government and Canada and Members of Parliament. We are hoping this will be recognized so that we can help further our causes and help make a difference.  

Special thank you to the following people or local Network for their help in helping us to collect Signatures to Petition the Canadian Government/ Parliament to recognize our conditions federally: 

Local Network

St. Catherine's, ON Canada (Lori Hart)

Nicole McFadden

Ken Anderson

Mary Rudy

Jeremy Webb



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