Tethered Cord

channer

Hello. My name is Mark, I’m 53 year old male. I’m looking for advice/ other adults with TCS. As an infant I was diagnosed with tethered cord, a deep sacral dimple, scoliosis and Sprengel’s deformity/scapula hypoplasia. At 9 years old I had left scapula surgery to reduce the should height. At 11 (1982) I was scheduled for spinal surgery to untether the cord but my father decided the risk was greater than the benefit. I was last seen by my surgeon at 17 (1988). Over the last 35 years I have had intermittent back and leg pain, but the past 5 years have become increasingly worse. While the pain is dull with occasional twinges I have noticed other symptoms worsen and am now struggling to walk any distance. I’m experiencing numbness/tingling/fatigue from my buttocks to my feet. The ‘tingle’ is constant. I need to use my arms to stand up and sit down. Standing for a prolonged time I become unsteady, lose some sensation in my legs and lock my knees and hips for stability. I have had bladder incontinence (frequency/urgency/leakage) for over ten years. My sexual function is poor and my bowel movements are an issue too. I was diagnosed with epilepsy 5 years ago and described these symptoms at the time to the GP and subsequently the neurologist who dismissed them as unconnected and I hadn’t thought about my childhood diagnosis at the time. This year the issues have increased and I’m experiencing irregular twitches and spasms and have had two falls. I’ve recently moved and have a new GP and am looking for advise and others experience in these issues and dealing with the GP to be listened to. Any advice would be much appreciated.

JMA28

Hi Mark, i have been diagnosed with tethered spinal cord (at L4) at the age of 54. Looking back at some issues I had previously, these are all connected. Have you managed to get any treatment? I am currently under a neurosurgeon but my issues of severe back pain, pins and needles in my legs, foot clonus and now tremors in both hands are being ignored.

I am interested to know what treatment others have had.

channer

Hello I was diagnosed as an infant with TSC. Over the last ten years I’ve had a number of symptoms that I thought were unconnected but now believe are related to the spinal cord. In September the back pain became so severe that I finally went to the Dr, she ordered X Rays and I’m booked in to see the muscular skeletal specialist next week. I think this is neurological but as they found arthritis in the spine this is the route my GP wanted me to go through.