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.
Next Live Online Support Group Meeting July 25 & 27, 2015, click on our Events page for details.
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.
I have to say that I have been through a lot since my diagnosis and subsequent surgery. I spent a month in hospital, followed by a long recuperation and I figured the worst was behind me. So I thought. Then I noticed some familiar symptoms in my…Continue
Wow what a day our little family (husband/daughter) had today. My son 18yrs old just had surgery today to take out a piece of his skull and vertebrae. The doc graphed part of his leg to join the two pieces together to allow fluid to the brain…Continue
I have been searching for a doctor in Cleveland that I can get to. I am getting worse and know it is getting worse. I am tired of gonig to the ER and them looking at me like I want to go there instead of the doctor. The neurosurgeon who did my neck…Continue
Started by Becky Smith. Last reply by Christine Webb (SM) USA REP 13 hours ago.
My name is Shaye, about 5 weeks ago i woke up and noticed that my pinky finger on my left hand was numb but tingly which is a contradiction in its self but thats how i describe it. after a few weeks i went to the dr who sent me for blood tests,…Continue
Started by Shaye. Last reply by Christine Webb (SM) USA REP 13 hours ago.
I'm new here. I am not diagnosed with SM, but suffering headache, shoulder and back pain for over 10 years, and muscle and eye spasm, and vertigo for years, every doctor visit was told to exercise and watch the progress. Only once my doctor did…Continue
Started by June Wang. Last reply by Betty J Haley Aug 18.
,,has anyone had a CSF leak that caused their sryinx to collapse? I am in process of getting referral to NS now, but been real sick past 2 weeks, my sryinx was stable before the lumbar puncture July 2 nd, had a few CSF leaks and 2 blood patches done…Continue
Started by Betty J Haley Aug 18.
Posted by Jamie Engerdahl on August 26, 2015
Posted by Haley Steinbach on August 21, 2015
Posted by Lauren Cavanaugh on August 20, 2015
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.
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:
Our websites are intended for information purposes only and may or may not apply to you. We are not doctors and we do not give medical advice. We do not endorse any doctors, products or procedures. Always consult a qualified medical professional for medical care. Please refer to our terms of service before using our sites. Terms of Service