Vasculitis UK

Cauda Equina?

I have recently picked up a rotten case of bi-lateral sciatica, which coincided with a drop in my steroid dose and a mild increase in my inflammation markers. I have been severe pain down one leg to the calf, and stabbing pain in the other hip. Pins and needles and periodic numbness are intermittent down one leg, and my reflexes are "not quite right".

My consultant team have ordered a lumbar MRI as they are concerned that it's either a severe herniated disk causing Cauda Equina, or vasculitis rearing again and causing inflammation around the sacral nerve roots. I'm not suffering double incontinence (common with Cauda Equina) but I do have to hop to the loo much quicker and more frequently.

Does anyone have any experience of vasculitis effecting the spinal column/nerves or of Cauda Equina as a possible consequence of long frequency high dosage steroids?

3 Replies

My doctors here in France say that the cyst on my spine and the sciatic type pain it causes has nothing to do with either vasculitis or my treatment. It's just a question of bad luck, having another problem to deal with, and it being more complicated than usual because of the vasculitis.



Cauda Equina Syndrome is a surgical emergency, so if your docs are concerned about that, I hope your MRI is scheduled for today...whether your symptoms are from CES or vasculitis, high dose steroids would help your symptoms, not cause them.

I developed the symptoms of Cauda Equina Syndrome immediately after I had disc surgery on my back for back pain. Besides sharp radiating pain, I developed numbness in the saddle area, urinary retention, constipation, and burning pains and weakness in my legs. My MRI showed a lot of inflammation and clumped nerve roots, but no CES. I was given high dose steroids and IVIg infusions, which helped my symptoms considerably. I was unable to taper off the steroids or IVIg because the symptoms would recur. I went on an unbelievable journey across the USA to find someone who knew what was going on with me. I found a chairman of orthopedic surgery who told me he thought i had vasculitis, because he had heard of 11 cases like mine (and he is the author of a text on "failed back surgery"). My rheum laughed off the notion that I had vasculitis. When my arms, hands, and face also became numb a few months later, despite 60 mg of pred and IVIg, i searched for new docs. Finally, I found someone who recognized my symptoms as dorsal root ganglionitis caused by vasculitis...I have vasculitis along my spine. My sed rate was over 100, and my von Willebrands factor was also very high. Thanks to him, I am now on immunosuppressants and feeling much better and am finally able to taper down on the steroids. The back pain before surgery was likely due to vasculitis, and not the herniated disc. The back surgery just inflamed everything even more...


MRI revealed bulging disks pressing on nerve roots. Awaiting neurosurgeon consult to discuss delamination and fusing.


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