Congenital spinal stenosis woes


Hello everyone,

I need some advice. I have congenital spinal stenosis in multiple areas throughout my spine which was discovered in 2010 because I was losing sensation in my hands and they would feel like pins and needles as if they were asleep. I have permanent nerve damage to both of my legs and have to get nerve root blocks every 6 months to a year to ease the pain because I refuse to live on pain pills. It has affected my balance as well, causing instability with turning/pivoting.

This last time I went to my spinal specialist, they told me again that I need surgery on my lower lumbar due to severe breakdown at L3-S1 which was causing inflammation and as a result, speeding up the stenosis (which is a progressive issue). They said, "We will do the nerve root blocks again but if it doesn't last this time, you are gonna have to have this surgery."

Here's my thing.... I've cared for many patients who've had the surgery and suffered from very severe nerve damage as a result of the surgery and I am SCARED!!!! I've seen two specialists and they both said that with my diagnosis, I will wind up in a wheelchair but they don't know how long it will be, roughly. Hell, having this surgery could very well PUT me there quicker than I would make it there myself.

I was told that I needed to change my career because pushing a med cart around was tearing me apart, so to speak. I've since gotten a much better, lower impact job working night shift and the med pass is such that I do not push a cart around anymore. I'm just flat out SCARED!!! I know the spinal specialist can't MAKE me get the surgery. They'd just decide not to treat me anymore, probably. Should I have the surgery or should I hold off? I should also mention that I've begun a weight-loss journey which I know will positively impact my health.

Do any of you have experience with spinal patients? Can you give me an idea of how good or bad they came through the procedure? Any information or advice would be appreciated.

Thank you all!