My Lumbar Spinal Stenosis Journey, flare ups?

MalcolmL

Hello My Lumbar Spinal Stenosis Journey

Hello everyone. I thought I'd share my story in case anyone has had a similar experience.

I am a 67-year-old male with Charcot-Marie-Tooth disease (CMT1A), which already causes numbness and weakness in both feet. Because of this, it can sometimes be difficult to distinguish between symptoms caused by my CMT and those caused by my spine.

Around 2025, I began experiencing severe pain that started in my left buttock and travelled down my left leg, consistent with sciatica. The pain was extremely severe for a period of time, but eventually it settled without surgery.

Unfortunately, although the pain improved, I was left with a permanent left foot drop. Since then I have been unable to lift my left foot or toes towards my shin, and the foot drop has remained.

Following MRI scans and assessment by the spinal team at the Norfolk & Norwich University Hospital, I was diagnosed with lumbar spinal stenosis, with compression severe enough that lumbar decompression surgery was recommended.

My surgery was originally scheduled, but on the day of the operation I suffered a fall in hospital. A CT scan unexpectedly identified a lytic lesion in my skull, resulting in my spinal surgery being postponed while this was investigated. Over the following weeks I underwent extensive investigations, including blood tests, a bone marrow biopsy, MRI scans and a PET scan, to exclude conditions such as multiple myeloma. Thankfully, all of these investigations were reassuring, and I have since been told there is no evidence of myeloma.

Because of these investigations, my spinal surgery was delayed, and I am currently awaiting a further review with my spinal surgeon before proceeding with decompression surgery.

For almost a year after the original episode I experienced very little pain, although the left foot drop remained.

However, this week I have developed what feels like the first recurrence of my original symptoms. The pain started in my left buttock, then travelled down my left leg, and is now mainly affecting the outer/front part of my left shin, with pain reaching around 8/10 at times. I also feel I may have developed increased numbness around my left ankle, although because of my underlying CMT it is difficult to know whether this represents a genuine change.

At the moment I am taking paracetamol, anti-inflammatory medication, and Oramorph to control the pain while waiting for advice from my spinal team.

My main question is whether anyone else with lumbar spinal stenosis has experienced symptoms that completely settled for many months before flaring up again. Did your pain come and go, or once it returned did it continue to worsen? I am also due to travel abroad shortly and am waiting to hear whether my spinal team feel this latest flare-up is something that may settle again or whether it suggests progression of my condition.

Any experiences or advice would be greatly appreciated.

bookrabbit

I recently had an MRI that revealed both cervical and lumbar neural foraminal stenosis which seems to explain many symptoms such as the numbness/ tingling in my hands and feet. But I saw a physiotherapist this week who told me that what I thought was sciatica starting in my buttock is actually pain from gluteal tendinopathy and that sciatica would start in my back. The tendinopathy along with meniscus arthritis in my knee explains a lot of my inability to walk too.

The numbness in my feet is variable and depends on how much I do. It has worsened and spread upwards since I got a mobility scooter and have been subject to the vibration from it, which is what prompted the MRI.

So variability is certainly possible.