Spinal Ependymoma

Hello all,

I came here trying to find people to speak to with similar experiences to my own but I suppose having a rare cancer makes that a little unlikely.

I thought I’d describe my own experiences here so that the next person who comes along looking has something to read.

I was diagnosed in 2014 with an ependymoma behind the L4/L5 vertebral bodies.  At the time I was 28 years old and had (have) a very active job requiring an extreme level of fitness.

I had surgery that year in the form of a laminectomy and a subtotal resection of the tumour mass which was around 10mm.  I woke from the surgery in a lot of pain but this was quickly eased with strong drugs and I spend the night on a neurosurgical ward.

After a few hours passed I realised that I couldn’t feel my genitals, inner thighs or perineum (saddle anaesthesia) and despite being desperate to urinate I wasn’t able to and so was catheterised.

As the days passed I gradually regained all of the lost sensation but was still unable to urinate or move my bowels (the latter likely due to pain and morphine)

By the second day I was able to walk very slowly and started doing laps of the ward as far as I could without the nurses telling me off, my pain eased to the point I was only taking ibuprofen.

My catheter was changed for the type with a valve so that I could feel myself needing to go and then release it myself to retrain my bladder and after about 4 days even this was removed and I could urinate normally albeit with a little difficultly.

I was discharged after 5 days and went home, there was still some difficulty with going to the bathroom and at one point I saw a urologist but these eventually resolved, the same was true of sex although the decreased sensitivity I had persisted and I eventually got used to it.

I then had 7 weeks of external beam radiotherapy, appointments are every day with weekends off. They begin by scanning and then giving you 6 pin prick tattoos to help locate you in the machine (you’d struggle to see mine even if I pointed them out)

The sessions last about 45 minutes and I listened to my own music whilst the staff positioned me and the machine worked around me.

They gave me sickness meds but I never took them, the only side effects were some fleeting, very mild sickness, diarrhoea by the 5th week and skin redness, I was still able to train at the gym during the course of the treatment.

For the next 5 years I had 6 monthly MRI scans which showed the remaining tumour to be stable.

In 2018 I started noticing numbness in my left foot, pins and needles running down my left leg when I bent over and shooting pains down my penis; a scan confirmed a metastasis of the original lesion behind S1.

I had a second surgery with subtotal resection and awoke feeling good, with no pain. Urinating was tricky but I didn’t need to be catheterised.

I was unable to feel the back of my left leg from the hip to the knee, my left buttock and left side of my anus and the left side of my penis and these never resolved. I gradually learned to live with them and managed to have a normal life including a normal sex life.

Another lasting effect is that I lost the function of thr interior parts of my left calf and the muscle gradually wasted away. I trained hard and the rest of the calf muscle compensated, I was still able to work and maintain a high level of fitness.

I experienced a spinal fluid leak which gave me headaches when standing but this eventually resolved and I was discharged after 3 days.

I developed some swelling and reddening at the surgical site which was suspected to be an infection so I was readmitted to hospital and had 2 weeks of IV antibiotics before being discharged.

Again I resumed a normal life with 6 monthly MRI scans.

In 2020 a scan showed that the lesion behind the S1 body had grown significantly and I was scheduled for more surgery. 
I was told there were overwhelming odds of significant nerve damage including being left completely incontinent and impotent and suffering such motor impairment that I would not be able to keep my job.

I woke from surgery feeling positive, in no pain. I had been catheterised as a precaution.

The surgery had been conducted using neurophysiological (probes in the muscles and rectum)  monitoring equipment to try to minimise nerve damage.

The first thing I did was check my legs worked, and they did. Over the next few days my catheter was removed and I found I was not incontinent, although peeing was difficult.

I also was not feacally incontinent although have suffered mild constipation ever since.

I had a spinal fluid leak as the dura could not be fully sealed due to scarring and had to remain in bed for around a week before being discharged.

I went home and started walking every day, my strength came back quickly and there was no pain.

Around 2 weeks later I awoke in incredible pain, I could barely move and strong drugs did nothing to ease it.

I returned to hospital where I was told the spinal fluid had leaked and created pressure outside the dura which was pressing on my spinal cord causing the pain.

I also had sepsis (but didn’t feel sick at all)

I spent 5 weeks in hospital on IV antibiotics then was fitting with a long line and sent home where I had a further 5 weeks of antibiotics.

scans and bloods showed everything was fine and I got on with life, trained and went back to work.

My latest scan 2 weeks ago showed my S1 tumour had regrown, surgery is now a nuclear option as they can virtually guarantee it’ll cripple me.

There may be some radiological or chemo options but I need to see my oncologist to discuss. I’ll keep you updated.