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.
Hello ~ I’m new here. I’m married and have 5 kids. My kids are in their 20’s except for a 16 year old. I was hit by an 18 wheeler in 2017. I was diagnosed with a herniated disc at T8/T9, a tear on my L5, tailbone curved inward and a syrinx that goes from my T5 down to my T12. The pain from all of this is almost too hard to put into words. Per my insurance, I did physical therapy and the epidural injections with no relief. I had surgery for the herniated disc this past August. Since then, the pain has only gotten worse. After another MRI, we found the syrinx has gotten a little larger. Per my neurosurgeon, I’m not to do anything but walk around and no lifting over 5 lbs. No cooking, no cleaning, no nothing. I’m so tired of taking pain pills that only mask the problem. I’m worried to death about my future. I just saw my NS this past Monday. He said he could go in and drain the syrinx but it would just come right back. I’m scheduled to follow up with him on 12/17/18. My back burns like it’s on fire constantly, I fill like I have something protruding out of my mid back, a feeling of electric shock throughout different areas of my back, trouble sleeping, can sit or stand for very long and numbness & tingling on both backs of my thighs. Would be interested to hear from anyone else with similar issues and whether or not you’ve had the syrinx drained, good or bad just would love some feedback. Thank you
I've been diagnosed for nine years now and when first diagnosed I was non-surgical and was told until I start to lose function I would remain non-surgical because the risk of paralyzation is greater than dealing with the symptoms. I've had lot's of time to do research and talk with others in FB groups and have decided that regardless of progression I'll not go through surgery. I hope you will consider getting a second and third opinion from known experts in the field and you'll find many of them on You Tube giving lectures on the disease.
I'm still mobile, but my pain level is mind numbing as only those of us with this disease know. It wasn't when I was first diagnosed, it was around a constant 4 and now it's at a constant 10 without opiates. I go off the opiates every few months due to the recent attack on them and although nine years ago when I was resistant to taking them and talked into taking them by doctors and nurses and they give me the closest feeling of normalcy, I regret agreeing to take them now as they may be taken away from chronic pain patients as doctors fear persecution. It's insane and ignorant, but other than being vocal to the our government leaders we are at other peoples mercy.
I'm truly sorry to hear you are among those of us who feel like the real zombies as that's how I feel most of the time, only half alive and that half is in pain.