Hello all, I'm new to the site and have tried to spend some time reading through some of the information, but even with a life time of back issues some of this is so over my head!
I'm a 30 y/o female with idiopathic scoliosis that was discovered freshman year of high school. My parents were advised not to do anything, because the curve wasn't significant enough to need attention.
In my early 20's I developed this left lower lumbar pain (near where your underwear line is). The pain was episodic, but when it was here it would last a few days and be awful! Then it would go away and its crazy how quickly I'd forget about it, until it came back. I dealt with this for years.
In January of 2013 two weeks before a trip to New York the pain came and I remember hoping it left before our trip. The trip was the worst experience! The pain was so bad. So all of 2013 I did all sorts of massages, stretches, injections (SI and facet) I had the nerve burned in my low back twice, I tried every opiate possible and nothing even made a slight difference in the pain.
In October I was diagnosed with an Autoimmune Disease and the Rheumatologist referred me to a Neurosurgeon for my back issues and thought it was odd that after all these years and many Ortho doctors I had never seen a Neurosurgeon. I had a CT Myelogram that showed "moderate Scoliosis" and some nerve issues/disc issues.
I saw the Neurosurgeon again (after the CT Myelogram and updated xrays) and he suggested a fusion. Which immediately terrified me and made me think about every horror story you've ever heard about back surgery. He explained that the left lower lumbar pain I was having was from my sacrum. That when I was a fetus my sacrum did not fuse entirely because it was attempting to create another space for a vertebrae and then realized it doesn't go there, but then never fused. So I have a complete "crack" line through my sacrum and the Scoliosis starts immediately coming out of my pelvis and his suggestion is that the curve is 25 degrees. The radiologist that read the films at one place labeled it a 38 degree curve.
Anyway, the Neurosurgeon said I needed to do a fusion. That I've exhausted all conservative treatment options and he thinks this is my last option (very, very nice not pushy doctor). He wants to fuse from the T10 through my pelvis. Which I was like WHAT??!! The curve doesn't even go that high, but apparently the T10 is a strong bone and used as an anchor bone for fusion to prevent breakdown on non-fused areas. Then they will go through my pelvis and fuse the separated sacrum.
My pain management doctor is completely against this. Which creates worry and frustration.
But at this point I live in constant pain everyday and it's a struggle as a young 30 y/o woman to do anything. So now this is set for February and I found this site hoping to hear encouraging stories or to find someone that really understands.
I've heard all the negative which doesn't help my anxiety and am just hoping to find some encouraging words or someone that can say I know how hard this is.
Thank you so much for reading this.