Honey Jerram
With no previous symptoms and no relevant family history, my mystifying symptoms started in 1984. Initially, I had a pain under my ribs on the left side.
This pain only started when I was lying down. I was living in Holland at the time and the health service was very good. After trying painkillers, it was suggested that the pain might be connected to my digestion.
I then had a gastroscopy, which found nothing. Any very energetic exercise would also give me a lot of this pain. By the time we returned to the UK it was becoming more troublesome.
Under the NHS I had more gastroscopies, colonoscopies, X-rays, and heart scans, Tens treatment, and even acupuncture. Eventually, I was asked to try using no pain killers for a period.
This meant that I could only sleep if I kept my body completely upright, sitting at the dining table, with sofa cushions up to my chin. By 1989, at a loss, my GP could only suggest referring me to the Pain Clinic.
My friends and relations were sympathetic but I knew they were wondering if it could all be caused by stress, after moving country from UK to USA, having a baby in Holland, then back to the UK with our family of 4 children.
This all involved house and school moving etc. and my father died too during this time.
The next move in 1989, to Atlanta, was the luck I needed. Armed with strong painkillers to see me through the night, after a couple of weeks I phoned a local doctor to ask for a prescription for more and a referral to a Pain Clinic.
He wanted to see me first. At that first appointment he listened carefully. He said there was just one test he wanted to do. I protested that I’d had every test under the sun and didn’t want any more.
Then I was persuaded to go for my first MRI. He was away on holiday when he phoned and apologised for not giving me the result in his office. I cried tears of joy when he told me that I had
a tumour in my spine. It was operable and the pain was not all in my mind. In 1989 a tumour the size of a walnut was removed at T3. It was biopsied and shown to be a schwanoma.
I had no significant problems after the first laminectomy, and regular MRI checks showed no further tumours. These checks were stopped on my return to the UK in 1994.
In 2011 I started to get the familiar stabbing pain in my left foot and ankle at various times, plus altered sensation in the ball of that foot, feeling as though I were standing in cold water. My GP ignored my fears and, after the usual painkiller prescription, referred me to a rheumatologist who listened carefully and sent me for an MRI.
This showed 2 tumours at L3/4 and arachnoiditis at L1. After insisting on seeing a neurosurgeon who specialised in spinal surgery, rather than a more general one, I was lucky enough to be seen by a very experienced consultant at a hospital in London.
A third tumour was found but it was decided it was too small to remove easily and, being benign and slow growing shouldn’t cause a problem.
I have since been diagnosed with schwanomatosis and been told that this is genetic although, happily, I know of no past relatives with the condition and none of my four children or nine grandchildren shown symptoms.
The good news is that my Neurosurgeon has signed me off from further checks. Nearing the age of 79, I am fit and healthy, and on no medication. I walk 3 – 6 miles a week and practice yoga twice a week.
I certainly have the usual aches and pains of old age but, other than that, I feel extremely lucky and I hope my story will encourage anyone worrying about forthcoming surgery and the aftermath.
If anyone has questions, or comments, I would be happy to respond.