In 1987 one Saturday morning the phone rang downstairs and I got out of bed and fell straight to the floor. Thinking that I just got out of bed too quickly, I got up and carried on to the top of the stairs where my leg just gave way again.
I fell to the bottom but this time I couldn’t get up and I managed to drag myself to the phone and get help. After visiting the hospital I was told I had fractured my coccyx and I had quite bad pains in my legs. After visiting the doctors several times I was sent to see a consultant and had lots of different tests, one of which was an injection of dye and x-rays. That showed I had a lump near my spinal cord. I also had an injection of steroids into and up through my coccyx which did relieve the pain in my legs after a while. I was then referred to a neurosurgeon who sent me for an MRI, and was informed that I had a growth in my spine and if I had an operation there may be a 50/50 chance that I wouldn’t walk again. Personally I didn’t like these odds and decided to leave it as it was and never heard from them again. This was in 1989 and I was aged 24.
In that same year I moved house and met my present partner, in between the odd bout of leg pain, and being told that the pain was in my head I got on with life. In 1996 I had a miscarriage. In 1999 I had a healthy baby boy. In 2001 I was pregnant again. The 20 week scan highlighted that the baby had spina bifida and encephalitis and we decided to have a therapeutic termination as the baby would not have any quality of life.
In May 2002 I started to have pains that would make me stop on the spot and I felt like I was being paralysed. My doctor read my last letter from the hospital I’d attended ten years earlier. I was sent there again and was operated on within the week. I have a dermoid cyst (intramedullary) which is on the very end tip of my spinal cord. I still had a tether, which was cut, and fatty filium that was stuck together, which they split. I have had a laminectomy between L1 to L5 and I also have an extra vertebra.
This took some getting over when you have a three year old child and wanted another baby and was told not to have one. Two years later, after lots of stress and scans, I had another boy, but had to have a C-section under general anaesthetic.
In 2011 I had a lot of pain in my leg but my doctor wanted me to try Amitriptyline. I only managed it for one week as I wasn’t myself and it wasn’t for me. I then went on Diclafenic and muddled along.
By February 2012 I was in agony but my doctor still didn’t want to send me back to the hospital, but did send me for an MRI. This took three weeks and then the result showed that the tumour had grown back. It then took another five weeks to get an appointment at the hospital, by which time I couldn’t drive, walk any distance, and was being pushed around in a wheelchair.
I had my second operation on 23 May 2012 and was told that the growth is likely to be on an 8 to 10 year growth cycle. I went back to the hospital a couple of weeks later and was still in a lot of pain, so it was suggested that I take Pregabalin and then get referred back when I think it has grown back again.
So that’s where I am now. It would be great if there was more information out there. I understand that it is quite rare in this position. I don’t know if it is linked to spina bfida and nobody wants to say yes or no. As I would see it, it would be good to have an MRI every year or two.