Pituitary News, Issue 9 - Autumn 1998.

Two member's accounts of being diagnosed with a Craniopharyngioma and their subsequent experiences.

J's story

My craniopharyngioma was diagnosed when I was two.

The neurosurgeon decided to fit a valve to drain the tumour rather than to remove it. Presumably, as I was so little, they thought it might be too dangerous to remove it then. After about two years, I began to get very bad headaches and to get very sleepy. Apparently, the nursery had to keep ringing Mum to collect me because "J's gone to sleep again in the home area"! So when I was four I had surgery and the tumour was removed. I was taken to intensive care, everyone was expecting me to me there for a few days, but apparently the next morning I sat up and asked for Rice Krispies and ice cream.

The op was successful in that they removed much of the tumour, but my pituitary was damaged, so I have had to take replacement hormones since - Thyroxine at first and then, when I was about twelve, Growth hormone, DDAVP tablets and Oestrogen. It was around this time that I began to realise I was different and that I had to take all the tablets because I didn't produce the hormones naturally like everyone else.

I stopped taking growth hormone when I was almost fifteen, and have since started taking Hydrocortisone tablets. I had been having brain scans, but these became less regular over the years and last year I began to notice I was getting headaches again. My consultant arranged a scan. The day afterwards (Friday 13th) the consultant phoned to say the tumour had grown again and I would need more surgery or Radiotherapy. I was really shocked and very upset, as I hadn't expected it to grow again after twelve years. I was also due to take my GCSEs in June and wondered if I'd be well enough.

After two weeks wait, it was decided that I would have surgery. This was a difficult and worrying time, but it also gave me time to get used to the idea. After the surgery, I had several convulsions one night on the ward so I was taken back to the High Dependency Unit for several days, but after that I seemed to recover quite quickly. The nurses were really nice - one of them brought in some nail varnish and painted my nails! After about eight days in hospital, I went home and spent another few weeks getting my strength back. I returned to school, going for a few hours each day until I felt strong enough to return full time. I took all my GCSEs and then had a well-earned summer rest. I have just received my results - I've passed all ten!

The Future? Well, I'm off to college to take three A-levels. In between times, I'll have lots of appointments with eye specialise, Endocrinologist, neurosurgeon and oncologist, as well as six-monthly brain scans. PHEW!! And I'll have radiotherapy at some point in the future. SO - it's something that won't go away - that I've got to get used to. I suppose - part of my life!

Y's story

I was first referred to an endocrine clinic in my last year of university, after several years of symptoms and numerous tests for diabetes mellitus (of course, I had Diabetes Insipidus).

After many tests, I was told that I had a tumour in the area of the Pituitary gland. Having always been more interested in the physics side of science, I'd never even heard of the pituitary gland and had no idea of its importance.

After several cancellations, my operation finally took place in 1995. By the time my parents visited me, I was sat up in bed. By the following day I was out of bed, and walking around by the weekend. Follow-up tests showed that I required various hormone replacements and I was told that I would need radiotherapy later, although the operation had been a success. Recovering from the operation was strange as at no time had I actually felt ill. There were not even any external signs by the time I left hospital.

Amongst the medication I was given was growth hormone replacement, which I started in August 1996. Lack of energy and exercise meant that I had put on quite a bit of weight. Using a holiday in Greece with my family (including my slim and athletic sister) as a target, I began to use a combination of exercise and a sensible diet to lose weight. I started with a short walk round the park a couple of times a week, but by the end of the summer I was swimming at least 5 km a week. I am sure the growth hormone helped me to do this.

I have since been told I will not need radiotherapy and my eyesight has returned to normal. One of the most difficult things I found was trying to get hold of relevant information. I contacted The Pituitary Foundation a year ago and their information, together with my sister's medical text books, has given me a much better understanding of the pituitary gland and what I can do to help myself. Attending the Taunton support group has also been really helpful. Swapping 'water stories' is something that tends to happen when Diabetes Insipidus sufferers get together. Other people don't realise that the tumour is something that has to be lived with and adapted to even after treatment. The Foundation and local groups can also be a valuable source of support for family and friends, who can feel helpless at times