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 Malformation (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.
Rare Diseases/ Disorders: 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. 50% of rare diseases touch children.
Carion Fenn Foundation 1 year Anniversary Video with Video Pledges from Ajax & Pickering Mayors & MPP Michael Harris and more. We are filming our 1 anniversary video which we will be editing a 1 minute promo segment to promote our Rare…Continue
To refresh my story, I've been dealing with progressively disabling symptoms for the last 15 years. I've been seen by Johns Hopkins, The Chiari Institute, and now a neuro muscular doc at Drexel. She wants me to have genetic tests which I cannot…Continue
Hi,I have begun to have burning in my feet and hands. It's pretty intense. Do I speak to my family doc, Neurologist, or do I see a pain specialist??Thanks for any help. This is new and painful.Continue
Started by Ed Van. Last reply by Lori Hart (SM) angel/Canada Rep Jun 17.
Hello all,My pain management has suggested that I try a spinal cord stimulator since pain meds and physical therapy are not helping me. I've done some research but have yet to find info on the stimulator and people who have a syrinx. So I'm…Continue
Started by Marquita. Last reply by Mary Rudy (SM) Jun 10.
After noon everyone, welcome new members to the group.I also have a question for the group.I seen the neuro surgeon a fewdays ago. He has done shuntsurgies and decompression surgeries,so I feel confident he has enoughexperience. He told me my…Continue
Started by Betty Corey. Last reply by Lori Hart (SM) angel/Canada Rep Jun 2.
OK, so my doctor is finally beginning to listen to me. I've tried really hard not to "tell my doctor his business" but I have continuously brought up this group, and a reference that I saw in this group to some studies done by the NIH. I have a…Continue
Started by Patrick Milligan. Last reply by Jayme May 26.
Posted by Marquita on June 9, 2016
Posted by Carion Fenn Network on April 6, 2010
Posted by Ed Van on June 14, 2016
by Carion Fenn Network Added June 10, 2016 at 1:35am
by Carion Fenn Network Added December 5, 2015 at 9:40am
by Carion Fenn Network Added September 15, 2015 at 10:39am
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