The story of Mary
I don’t even remember the first time I heard the actual name of what I have, I don’t remember the first surgeon that operated on me calling it by this name, he called it a “small cyst”! What did I know, all I knew was I was in a ton of pain, I’d been to physical therapy a number of times, actually that is who said I needed to be seen by a neurologist or neurosurgeon.
I went to pain management, I had shot put in my back a number of times, to no relief. So I saw the surgeon who said I needed a t “decompression/laminectomy” and was supposed to be better, haha..that’s when the problems really began. I didn’t get better, I got worse! After much searching & researching, ( I had found the name, Syringomyelia on an MRI report), I finally found both a neurologist & a neurosurgeon who knew this disease and told me what the truth was about it, there is no “cure”! It’s a spinal cord disease that effects the nervous system, my “syrinx”, or pocket of fluid on the spinal cord is from T4-7.. Mine isn’t big, but size doesn’t matter, once it effects the nerves the pain is awful, sometimes un-relentless and life changing. This all started with me in late 2006, in Jan. 2007 I had the first operation, my first grandchild was born the day I got out of the hospital too. My second surgery was for “tethered cord” release, which is another spinal disease in itself! I’ve learned that life will never be the same, I can no longer work, I can’t do everyday things like walk my dog, heck I can hardly walk myself. My balance is off, my body temp. is affected, I can’t feel hot and cold from the middle of my back down, I can’t vacuum my house w/o being in pain for days. I can no longer plan on going out with friends because I never know how I will feel, which most days is awful, constant nerve pain. I’m 54 yrs. old and feel like I’m 80 or 90! We need to raise awareness to this disease, so little is know about and so much you hear isn’t accurate either!! There needs to more research being done for this Spinal Cord Disease!!
If my story can help one person searching for an answer to there pain I feel I have done something good. And in closing I’d like to say thank you to Rare Disease Day for their help in raising awareness to all these rare diseases/disorders.