The story of Stephanie
This will mark my third year sharing my story living with Syringomyelia on Rare Disease day. I do this not for the attention, or for sympathy, but to raise awareness for an extremely rare spinal chord disease that I was diagnosed with in 2010. Over the past few years I have had the pleasure of meeting others with this same disease and I feel that our voices need to be heard. And thanks to Rare Disease Day, we can finally do this ☺
They say that 8 in 100,000 will be diagnosed with this disease in their lifetime. I am from Canada so when you use this stat with our current population, your odds of getting this disease is pretty low. Your odds of finding a doctor or Specialist that knows about this disease is less rare than being diagnosed with it. Syringomyelia is diagnosed when a person has an MRI of their spinal chord and they find pocket(s) of cerebral spinal fluid in the spinal chord. Over time, these pocket(s) of fluid change in size getting bigger of smaller but always leaving the damaged cavity behind in the spinal chord. This causes direct damage to the nerve fibers in the spinal chord. Also, if the pockets of fluid expand enough, they can constrict the normal flow of cerebral spinal fluid that runs from the brain via the spinal chord on either side and it disrupts the signals that the brains is trying to tell the rest of the body to do via the central nervous system. So basically, my body is “short circuiting” and there is no cure/control for this.
A person can experience severe chronic pain, headaches, numbing, weakness and tingling of arms and legs, cardiovascular issues, vision issues, bladder and bowel issues, and in some severe cases, paralysis. Also, it causes secondary conditions like Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, etc. Surgery is a last resort as it can do more harm than good and really, who would want someone cutting into their spinal chord to insert a tube that then gets wrapped around other organs so it may help drain the syrinx. There is a 20% success rate for this surgery. Not everyone comes out with good results, and the surgery will most likely have to be repeated down the road. My current Neurosurgeon told me that if I had the surgery at this point there would be a good chance I would come out of it without the use of my legs and I would have to go into rehab to maybe get that use back. That was my deciding factor NOT to get the surgery done at this time. I feel until things get really bad, IE, I can’t walk or use my arms or hands, maybe then we will explore this option. This is also not a cure for Syringomyelia.
This past year has probably been one of my better years in a long time. I think after a while you start to accept your fate and you learn to live with it on a daily basis. Does it make the disease easier, no, but life still has to go on. I was diagnosed with Fibromyalgia this past year so I am learning to live with that condition too. The scoliosis curvature in my c-spine is getting a little worse which has herniated another disc, bringing the total to three herniated discs but the Syringomyelia seems to be staying stable. So I will take it! I still have Chronic Fatigue Syndrome and a sleep disorder, I don’t think that will ever change but at least I am handling life a little better. I can finally see the positive again.
So to others that have just been recently diagnosed with this disease, don’t be afraid, there are a lot of us out there and we can be found for support through Facebook or various websites. I can’t tell you how much it helps to have SM buddies that get what you’re going through. I will be forever grateful to all the awesome people that helped me when I was first diagnosed.
To others that are living with this disease, don’t give up! Just take it one day at a time. I know some days can really suck, but hang in there and remember you are not alone. Keep hoping and praying that one day soon they will find a cure for us ☺
To others that know people with SM, be patient and understanding. We didn’t ask for this. We didn’t ask to be sick every day of our lives. We don’t mean to cancel on you at the last moment if we have plans, or not being able to plan too far ahead, we do the best that we can every day, really!! We only have so many “spoons”.