Carion Fenn Network

Watch Health 180 with Carion Fenn RogersTV Durham Channel 10 Tuesdays 6:30pm Est

Syringomyelia, Chiari Malformation, Rare & Chronic Diseases Support Community. A place to share, learn & support each other worldwide.

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The Carion Fenn Network has worked hard over the past 9 years to provide the support and resources you need so that you would not have to go through this alone. We are asking members to become subscribers for $20 yearly since the cost to maintain the network is not free. Join in helping to maintain support and keep providing our community worldwide.

Subscription Includes:

  •  1 Year Subscription
  • Feature your Story in Newsletter (Optional)
  • Be a guest on TV Show (Optional)
  • Feature Member Listing
  • Support Group Meeting Expert Presentation Slideshows. (Access)
  • Subscriber Banner on Profile Picture

It's the responsibility of our subscribers to take the initiative to be apart of the optional features. Feature for newsletter or TV Show will be through a selection process of subscribers. Thank you for your support!

<Click here> to join our Subscriber Group after payment. 

Donate to Support our Network

Carion Fenn Network focuses on providing the platform for our members to support each other. With your contribution, you are helping our team provide educational information, helpful resources, and provide support to our members needed to navigate their ailments. Every donation matters in ensuring that our network is available to everyone. Keep in mind that we do have members who can't afford to subscribe or donate who need the support so if you can donate, please do so that someone who can't may continue to have the support they need.


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Show Support for your cause(s):

Help support our Network & its innitiatives by purchasing and wearing our Syringomyelia & Chiari Malformation Awareness Wristbands custom designed by those affected: Blue and Purple. Order Now!


Syringomyelia & Chiari Wristband


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

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

Debra Talked to Carion, members of our social  network (Nancy & Kellie), & Callers including Jamie McDonaldSueHarlen & 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. 


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Events Coming Soon

Mental Health Symposium - May 2018

Mental Health Forum - October 10, 2018

Health Expo April 7, 2019

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Upcoming Events:

1) Rare Disease Proclamation: February 20, 2018 (Town of Ajax), for details <click here>

2) Rare Disease Flag Raising: February 28, 2018 (City of Pickering, for details <click here>

3) March 2018

Presenter: Coming Soon!

Host: Carion Fenn Foundation in partnership with Ajax Public Library 

How to access our Support Group Meeting:

Location - Ajax Public Library (Main Branch): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada.

Online -Coming soon. 

4) Watch Health 180 with Carion Fenn on Rogers TV Durham, Channel 10 or the Live Broadcast online. Tuesdays at 6:30pm. Health 180 with Carion Fenn, explores healthcare providing health tips, patient stories and expert advice for anyone interested in health, wellness and living their healthiest life on Rogers TV Durham Channel 10.

5) Mental Health Symposium: May 8, 2018 (Town of Ajax), for details <click here>

Latest Activity

Subscriber (SM)
Jill McLaren left a comment for Антонов Владимир Николаевич
"Happy Birthday Ahtohob from all of us here at Carion Fenn Network. Many Best Wishes, Jill xo"

Subscriber (SM)
Jill McLaren left a comment for Katy Bru
"Wishing you a Happy Birthday Katy from all of us here at Carion Fenn Network. Best wishes, Jill xo"

Subscriber (SM)
Jill McLaren commented on Glenn Brace(SM)'s blog post IV Lidocaine
"Hi Glenn, thanks for replying back and explaining the procedure you had done with lidocaine. I have…"

Member (SM)
Glenn Brace(SM) commented on Glenn Brace(SM)'s blog post IV Lidocaine
"Hi Jill. First of all, I think i posed the question in the wrong spot. Probably should of been in…"

Our Global Causes

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. 

  • There are two major forms of Syringomyelia, acquired and congenital.
  • Symptoms develop slowly over time and may occur on one or both sides of the body.  
  • Syringomyelia may also be caused by spinal cord injuries, spinal cord tumors, and damage caused by inflammation in around the spinal cord. In some cases, the cause is unknown (idiopathic).

Chiari Malformation (CM) Key-Ar-ee-mal-for-MAY-shun: 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. 

  • Chiari Malformation has several different causes.
  • Later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to traumatic injury, disease, or infection. This is called acquired or secondary Chiari malformation. 
  • By structural defects in the brain and spinal cord that occur during fetal development. This can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients. This is called primary or congenital Chiari malformation.  

Rare Disease: There are over 7000 known rare diseases/disorders. 1 in 12 Canadians will be affected by a rare disease. Rare in the USA, when it affects fewer than 200,000 Americans at any given time. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare. 

  • 350 Million people globally are fighting rare diseases.
  • Rare Diseases Impact more people than aids and cancer combined.
  • Approximately 50% of the people affected by rare diseases are children; 30% of children with rare disease will not live to see their 5th birthday.

Chronic Disease: A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. 

  • Chronic diseases such as diabetes, cancer, arthritis, mental illness, and cardiovascular and chronic respiratory diseases are major contributors to reduced quality of life, loss of productivity, and increased hospitalization and health care costs as well as premature death in Canada.
  • Out of every 5 Canadians aged 20 years or older, 3 have a chronic disease and 4 are at risk of developing a chronic condition.

Carion Fenn Foundation is a registered charity established to promote health by providing support services and resources for chronic disease management, while educating the public and those suffering with Syringomyelia and Chiari malformation about rare diseases. 

Blog Posts

Long time since I've posted

Posted by Lydia Leeson SM on February 16, 2018 at 5:55am 1 Comment

For those who don't know, I hit my head at work and a year later, after fighting to find answers I was diagnosed with SM.

I was depressed and angry, but found solice in this group. I slowly overcame my depression, and learned to have some… Continue

IV Lidocaine

Posted by Glenn Brace(SM) on February 11, 2018 at 8:44am 3 Comments

Hey. I have an appointment with Pain Management tomorrow for an IV Lidocaine injection for pain to my lumbar spine.  My syrinx/shunt is at T9 but I have multiple bulging degenerative discs in my lumbar and cervical areas as well. Plus…


Back in the ER again. I'm getting tired of it. Are you tired of seeing doctors

Posted by Carion Fenn on February 6, 2018 at 2:30am 4 Comments

So I'm back in the ER again with lower abdominal pain. So tired of being in the hospital as a patient. Tired of seeing doctors. How about you?

MRI Results are in after a recent fall compared to my MRI 2 months before giving birth

Posted by Carion Fenn on January 28, 2018 at 10:57pm 7 Comments

Reviewing my new MRI from Lakeridge Health, comparing with MRI months before I gave birth with my son Eithan. Can't believe I have my son on my MRI Images. A step needed for giving birth safely with…




G'day All,                I was seeking feedback on Shunts, how many people have had success or nothing but issues with them. I had my 12 month visit with my Nero surgeon and 12 month MRI, it is showing my Syrinx has now enter my neck region and as…Continue

Started by Shaun Kelly in Uncategorized Feb 3.

Pregnancy and Delivery

I am looking for some information from anyone with syringomyelia that have been pregnant and their delivery choice. My daughter has Syringomyelia and is pregnant with her first child. Some doctors say it is safe to have natural birth while others…Continue

Started by Corrine in Sample Title Jan 29.

Decompression 3 Replies

G'day All,                I was wondering if someone can explain the term Decompression and what it is used for, is this the same as the shunt process.Continue

Started by Shaun Kelly in Sample Title. Last reply by Katherine Keyes Webster Jan 20.

Shunts Good or Bad

I just had my 12 month appointment with NS and latest MRI it is showing my syrinx has increased is now elongated along my whole spine into my neck.My NS is now talking about a shunt I am concerned as my research so far points at a lot of people…Continue

Started by Shaun Kelly in Sample Title Jan 18.


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