The story of Stephanie
I was diagnosed with Syringeomyelia or Sy-ring-go-my-What? as we call it in 2009. When I look back now I can honestly say that some of the symptoms I have, I have had most of my life, but I never chalked them up to being part of this rare condition.
In 2004, I went to hang up a jacket before leaving for work. I can honestly say I have never felt such pain before in my neck that radiated down my whole body that it dropped me to the floor gagging from the pain. I laid on the floor for a good half hour bawling my face off not understanding what had just happened. When I was able to move, I called in to work to let them know what happened and spent the rest of the day at home lying on the couch in severe pain popping Tylenol. The next day I returned to work still in pain but made myself an appointment to the chiropractor. At my appointment, it was thought that I pinched a nerve in my neck. I went back a few times and things slowly improved and life went on. At the gym I started to notice weakness and pain in my arms, once again I chalked it up to working with too much weight and cut back on the amount of weight I was using. When things didn’t improve I cut out weight lifting all together. Then the neck pain came back, then the back pain, then the hand pain, then the weakness in arms and hands, then the pins and needles and numbing. Then I started having issues with my feet and legs. Then weird feelings in my head, headaches, nerve pain, nausea, bladder/bowel issues, vertigo, I also started getting chronic fatigue. No matter how much sleep I got I was always tired and in pain. What was going on with me? I was always active and ate healthy, I was only in my early 30’s, something just wasn’t right. So I kept on complaining to my doctor who thankfully listened and started to order the blood tests, and xrays, CT Scan, and then a MRI. Of course this took a few years, as the Canadian Medical system is a little slow with things. My xray showed degenerative disc disease (which is common) the CT Scan showed a bulging disc (which is also common). The MRI was what changed my whole life forever. I was sent to Kelowna to see a Nuerosurgeon to go over the results. At that time I thought I was going to discuss what to do about the bulging disc. When the Nuerosurgeon went over the results, I literally felt like I was Charlie Brown and it was the teacher talking all muffled, I heard the part about a “syrinx” in the spinal cord and there was nothing that could be done but other than that, everything was a blur. I remember being left in the room with the door being left open bawling my face off with everyone in the waiting room staring at me. On my way home (2.5 hour drive) I was so upset I pulled over and called my husband and tried to explain what I was told. It was then that I decided to get a second opinion. Of course being the person that I am (I swear I suffer from OCD LOL!) as soon as I got home I started researching everything I could find on syrinxes. Thankfully I came across a website called SM awareness by Carion Fenn and that opened my world to Syringeomyelia. Medically Syringeomyelia is when a pocket of fluid forms within the spinal cord. The spinal cord is made up of tiny nerve fibres so this disrupts the signals from the brain to the nerve. Eventually this permanently damages the nerve in and around the spinal cord (central nervous system) Depending where the syrinx is, is dependent on your symptoms. My syrinxs are C5-T1 and I have also recently found out (third opinion) I have a really long skinny one that extends most of my thoracic spine. My life has changed dramatically. I no longer work, I no longer do sports of any kind, housework is limited, getting out and about is limited, just living a normal life is no longer a possibility for me. My symptoms vary everyday. One day it can be bad arm and hand pain, another day severe headaches, next day bad backaches, or vertigo another day. You never know how your day is going to be so you just take it one moment at a time. If anything I have a new appreciation for life. I am thankful for each and every person that is left in my life. My husband has been my rock and constantly reminds me that it could be worse and it’s so true, it could be. Not that this helps my situation but it does remind me to keep going. I hope one day they will find a cure. I see so many others that have it way worse than me. The children that are suffering from this just breaks my heart. So rare disease day means so very much to me!