Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.
I am new to this group. I'm a 35 year old stay at home mom living in Canada. I have 5 and 8 year old boys.
I started experiencing symptoms 4 1/2 years ago (mainly dullness in left leg/foot and weird sensations that would jump around). Took a while to get in to see a neurologist, who gave me an MRI. I was convinced he would say I had MS because my symptoms were so similar. He says no MS, it's just some fluid in your spine, but it's likely something you've had since birth and not the cause of your symptoms. So we did a follow up MRI 6 months later to be sure it was stable, and it was. (It is T3-T6)
So I tried my best to put it from my mind and live my life, raising two kids. I had very few symptoms, would go 1-3 months feeling no more than the odd weird sensation that was slight and last a few days and go away. This was interspersed with slightly bigger "relapses" lasting a few weeks where the odd sensations and dullness would increase to a more disturbing level, but the type of symptoms always were similar... usually sensory. Having been a few years, I had HOPE that it was in fact benign and wouldn't get worse. I had more days with NO, or almost no, symptoms, than ones WITH symptoms... I even thought maybe it was just something similar to sciatica.
Well, starting the beginning of April I've had the biggest "relapse" yet. And it's still going. These symptoms are new and now I am so sooo SCARED. For the first time I have pain. Aching muscles, pain in different spots on my left leg and now my left arm, too, my back beside the syrinx, my wrist, the odd shooting pain on the left side of my torso, the front left shin felt like I had stretched my muscle exercising when I hadn't done anything... two nights ago I was woken up multiple times with either my left leg or my left arm feeling like it had completely fallen asleep. Last night I was woken up with sharp back pain... My pain is not crazy bad, but I'm scared of where this is leading.
I know I will need to call my neuro again, get another MRI, and ask him to refer me to a neurosurgeon who hopefully knows more about this....
But... I've been doing research.... and I feel sooo hopeless reading about this diagnosis. I can't help constantly wondering "WHY ME?!" Pardon my language, but I'm scared shitless, my anxiety level is through the roof. How am I supposed to live my life, raise my boys, and pursue life with this hanging over my head?
All I read is: there's no cure, no one knows anything about it, no one can tell you how you will progress and how quickly, the only surgical options are sketchy and don't really work, no one knows whether to even bother with surgery, it will cause excruciating pain that won't really respond to medicine, and it will eventually paralyze in addition...
Can anyone help calm me down or offer hope? Please? How do you deal with this? This is basically my biggest fear in life come true.
Please let me know what you learn! Best of luck!
I will probably bring stuff like studies from doctors that know more about this to show my doctor that these are symptoms of syrinxs!
My Syrinx was caused by an injury back in July '16. Working at a hospital I tried to pull a 250lb patient onto a stretcher who was stuck in the mattress. The only thing that moved was my T8 disc. Broke and leaked into my spinal cord. I felt the immediate pull. For 8 months a orthopedic surgeon misdiagnosed my symptoms as, "Impossible, in my head." Because I'm worker comp, he even accused me of faking weakness in my hand. Because I'm a fighter, I went to a neurosurgeon, private pay who saw the sack of fluid immediately at T4-T8 and said the symptoms were absolutely caused by the injury. One battle won.. Now I'm under the care of a neurologist, neurosurgeon said he'd have to slice me open 8" under the arm, deflate my lung and crack a rib to get to the syrinx. Like many of you said, no guarantee symptoms will improve and high risk of losing my legs. I'm also under the care of a neurologist now who wants to believe I've also got fibromyalgia. I think that's a cop out. I had no prior symptoms but since the day of injury, I've had numbness in left hand/fingers. Pain radiating up the neck, down the arm. All left side. Back in July '16, when I'd lay flat my feet would tingle and calves burn. Now when I lay flat my legs become paralyzed. 95% of the time since injury, I've had a fire/burning at T6 that will radiate up or down if I ignore it too long. I used to walk 4-6 miles a day, now I can barely do 1. Heat helps and recently started taking tramadol. However, with new laws, no one wants to prescribe it!! I had to fight 3 doctors last week. OMG? Is anyone else have similar issues to mine? I've done a lot of reading, these are so rare no one really knows how to help us? My kids are grown, I have compassion for you who have little ones and have to hide the pain/symptoms, my hats off to you!
Sory for your condition. But believe me i am here to help. I also have syringomyelia. Instead having a surgery. I advice you to go for filum terminale surgery. This method of surgery is not complicated. And no sensory or motor deficit will be there. And your syringomyelia will be treated well. Institute of chiari and syringomyelia. Is helping people with it and it really works. I also going for this procedure.
Do you have to pay out of pocket for it? Is it expensive? When are you going to have it done?
I know people don't tend to post on forums like this if all is going well for them, but boy could I use some positive stories.