cont... about me evie toombes

I was born with a form of spina bifida, a fatty mass at the base of my spinal cord affecting the nerves to my legs bladder and bowel. When my parents raised concerns at the GP's over a bright red, swollen little toe on their otherwise 'healthy' (or so it appeared) daughter I was referred to QMC for further investigations.  From then on my life changed. A neurosurgeon ordered an MRI and on my first birthday we were informed that I had a tethered spinal cord with a fatty tumour. The spinal cord was getting stretched, normally it should hang freely (this is where my bowel/bladder and lower leg problems come from). The medical term for this condition is Lipomyelomeningocele and is a form of Spina Bifida. Further MRI’s followed to determine if an attempt at de-tethering was possible, as sometimes the nerves are so entwined it’s too risky to carry out the procedure. After careful consideration and second opinions it was decided to operate as soon as possible. At 16 months old I had my surgery and after nearly 6 hours the surgeon had done as much as he safely could. The fatty tumour remained but he was able to release the cord partially and release some tension on my spinal cord.  After 10 days in hospital I returned home and climbed straight onto the couch – an action impossible before the operation and I was up on my feet, walking around within 3 weeks.

 I hadn’t learnt this in a hospital cot and I definitely had more movement. I used to bottom shuffle everywhere and never crawled. This stopped instantly. However it became evident I had bowel and bladder problems and at 3 1/2  years old, intermittent catheterisation every 3 hours began. It was a difficult step for my mum and dad as I didn’t want it and found it extremely stressful, especially knowing that after every battle the same ordeal was due again in a couple more hours. It’s incredible that more than 10 years on, I now accept it as a normal part of my life!  Following a horrendous few years with my bowel not working and suffering numerous accidents often on a daily basis – I had an ‘ACE‘ operation in 2015. It used my appendix to create a chanel into the top of my colon so I can flush it through via a stoma.

I’m still struggling though as it takes me hours to do which is exhausting. It’s initially reduced the accidents but I cannot live like this forever as I have alot of pain. Apparently in some people it just stops working though for some it’s incredibly effective and allows them to lead a normal life.  I’m hoping to be allowed a bag to reduce the exhaustion but currently my surgeon is reluctant.