Tethered spinal cord symptoms starting in adulthood

[Linners1]

Hi,

has anyone had any experience with a tethered spinal cord? Or can anyone advise?

For context; I was born with spina bifida occulta, a split spinal cord with a bony spur going through it, scoliosis and a tethered spinal cord. The hospital took a watch and wait approach and I was discharged when I was sixteen years old as it was believed that I was out of the danger zone. Apart from back pain, a bit of incontinence and extremely high arched feet and curled toes I haven’t ever really had any symptoms. I slipped and suffered some wedge fractures to my thoracic spine a few years ago and developed mild kyphosis which seems to have set off new symptoms. I started having problems with properly emptying my bladder and felt like I was always going to the toilet. My GP referred me to a neurologist and urologist and the neurologist did some tests which showed loss of reflexes in right ankle, minimal reflexes in both legs and mild weakness in right leg. I’ve had an MRI and there’s no sign of nerve compression, but my legs are gradually getting weaker. I now get electric shocks up and down my legs and the weakness in my right leg has been progressing.

Is it possible that my tethered cord has started to develop symptoms in my adulthood due to wear and tear as I’ve aged or because of my wedge fractures and the development of kyphosis? My neurosurgeon says it only really becomes symptomatic during growth spurts, but I’ve read that it can develop as we age.

Please can someone help, I feel like I’m going out of my mind. :(

Hopeful bump 🤞🏻

Are you in touch with ShineCharity? A quick look at their website would seem to agree with what you describe.

Yeah, Shine Charity have been providing me with a bit of support and have said that they’ve heard from lots of patients that they start to experience symptoms as they age. I’m in my thirties so they’re surprised that I’m already experiencing symptoms, but I’m convinced my fractured vertebrae and loss of height in my spinal column have started off a chain of events. I just wish I knew people who have been through similar as sometimes it can feel very scary and lonely.

Did you have spinal fusion for your scoliosis?

No, I’ve never had spinal fusion. The scoliosis has always been quite mild, although now with kyphosis on top.

Another point to add; my GP referred me to physio to strengthen my legs on me recently. They did a neurological examination and I had absolutely no strength in my right leg to do any of the things she asked me to do. It had progressed quite a lot since my last examination in November. The physio wasn’t sure what to do with me so said she would speak to her supervisor, she phoned me the week after saying if I weren’t already under investigation with a neurosurgeon they would just refer me to neurosurgery and she had sent me some exercises but wasn’t sure how well I would tolerate them.

Hopeful bump