Acromegaly: History of an Illness

In 1970 Frankie Garrett was diagnosed with acromegaly, a syndrome where the pituitary gland produces too much growth hormone. In this piece, written in the 1990s, she describes her symptoms, diagnosis and subsequent treatment.

My symptoms

At my hospital bed, my doctor asked me about my medical history. I told him about the gradual increase in the size of my hands and feet, and the difficulty in conceiving a second baby because of strange changes in my menstrual cycles.

For many years my hands and feet had grown gradually larger – I had to buy a larger sized shoe every time – and my wedding ring had become so uncomfortably tight that I had had to take it off whilst I was expecting my first baby, Susan.

As time went on I put on a lot of weight and my shoulders became very rounded. Susan was two years old when changes started to happen to my menstrual cycle. Periods didn’t come at regular intervals any more. I couldn’t rely on myself any more – it was disturbing.

Time went by and after a miscarriage, my menstrual cycle became more and more bizarre. I was worried and didn’t feel really well, either. I was booked in for an examination under anaesthetic.

Alexander

“You’re pregnant,” said the doctor. “We won’t be doing the examination.” Heavens – I was so surprised it took me a week to get over it. I was three months gone and I never knew it.

When Alexander was born, he had none of the vibrant personality of Susan when she was born. I remarked that the baby hadn’t cried, so they slapped him and the poor little soul let out a thin cry. I’m afraid he had a short life of trips to the hospital with pneumonia, bronchitis, etc. At only three and a quarter years he died of a heart attack and has left us to grieve ever after.

Nothing was seen to be wrong

After Alex’s birth I never had another period, although I was examined a year after having him and nothing was seen to be wrong. So time went by and over the years my hands and feet gradually grew longer and my face changed too – not tissue, but bone!

Other people were worried. They could see it in my face, whereas it always looked the same to me. My back was bending too, making me more and more round shouldered, but I couldn’t see that either as it was behind me. I sometimes mentioned it to my GP in passing when I took Alex to him, but he paid no attention at all.

A blank patch in my eye

So I tried to forget about it until one morning in 1970 when I realised I could not see properly. There was a blank patch in my right eye and no matter what I did – washings out, drops, etc – nothing shifted it. Of course I knew it was inside the eye and I was very worried.

Neither my GP nor the optician could see anything wrong in the eye. So my doctor arranged an appointment with an ophthalmic surgeon.

The consultant was the man who saved my life. He was a specialist at the hospital, and had seen my condition in patients there. He asked me all the right questions and took X-rays of my head, the first of hundreds that were taken. Then he said the momentous words, “Would you be prepared to go to another hospital for treatment?”

Yttrium implant – the procedure that didn’t happen

Another consultant at the hospital told me what they could do for me. They would insert two fine needles through the pituitary gland, which lies under the brain, and pass through a radioactive seed called yttrium.

However, after missing this operation due to electricity blackouts in the hospital, the doctor told me very seriously that they had looked at my X-Rays again and had decided that the yttrium seed procedure was not the right operation to do after all.

My condition explained

At the hospital the doctor thoroughly explained my condition – I had a tumour on an enlarged pituitary gland which had caused the condition known as acromegaly (from the Greek acro, top of, and megaly, illness). This was the cause of period loss and growth of bones in the hands, feet and jaw. The overgrowth of the gland also meant that the small space under the brain where the gland lay was full and the optic nerve was being pressed upon, causing loss of sight.

The doctor said I would go blind eventually and told us a little about the operation to help me – transfrontal pituitary surgery. He said they couldn’t guarantee to cure the acromegaly but the pressure would be removed from the optic nerve.

Later in January I travelled up to London for a three month stay in hospital, which takes us back to the beginning of my story.

Brain surgery and its aftermath

I was brought in on a Monday and, after speaking to the doctor, my operation took place on the Thursday. My dad was there the whole time and he said it took seven hours. Blissfully I slept right through it.

For many weeks after the operation I was not conscious of anything and in fact I was extremely ill. At some time a nurse came by me and said something like “Oh you look so much better now.” I thought she must have the wrong patient, as I had never seen her before. “No,” she said, “It was you all right, you were very ill and I nursed you like a baby.”

In operations like mine the skull bones are not replaced immediately for safety reasons, and in my case the site swelled up every day with brain fluid that could not escape through the normal channel. This had to be drained off by using a lumbar puncture needle every evening. Fortunately I was only aware of this procedure being done for one week, although apparently it was taken off every day for seven weeks!

Coming back to normality

Eventually they put in a ventricular shunt which drained off the brain fluid to the stomach, which is the normal outlet. The skull bones were finally replaced at the original site and I went back to the original hospital to see how the hormone count was doing. The hormone count was still excessively high, but thank heavens, my eyesight was back to normal.

Most of the time during my three month stay in hospital had been spent in blissful imaginings. The whole winter passed by without me knowing anything about it. Coming back to normality took a little while.

Sue and Alex

All this time I’d been away I hadn’t seen my dear little daughter Sue. Peter told me that she would have been frightened by the strange way I looked, but shortly before I left hospital I found out the real reason why she’d not been allowed to come.

That was that my little boy, Alex, had died and the doctors were worried that if I found out it would stunt my progress. So no visits from friends, or cards or letters, in case his death was mentioned.

I didn’t see Sue for three months and when we finally did meet she must have felt as strange as I did.

After many weeks at home I got used to the old routine again, but I missed my little Alex dreadfully.

Postscript

Frankie went on to live a full life after her operation. She worked voluntarily as a receptionist at Queen Victoria Hospital, East Grinstead, and later at Adeline Genée Theatre in the Box Office.

Frankie Garrett died on 28th December 2006, aged 68 from bronchial pneumonia. She is survived by her husband Peter and daughter Susan.

Useful information and links


If you have any questions relating to a neurological topic, call the Brain and Spine Foundation Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk

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