Sandrine

This patient testimonial reflects only this person’s opinions about their own care. Each person’s case is unique.  You should always consult a doctor for information and advice about the diagnosis and treatment of acromegaly.

Please note that all treatments may have side effects. Ask your doctor about side effects when considering a given treatment.

There was no specific symptom that made me go to the doctor as I’d already been having diverse and varied pains for several years.

At the time of my diagnosis I was seeing a rheumatologist because I had severe pains in my shoulder. He recognised that I had acromegaly because of how I looked in the face and asked me if I’d had noticed any changes in my appearance generally, and I had, my shoe size had increased by two sizes in 4 years.

The rheumatologist then suggested that we do some additional blood tests and these confirmed a few days later that I was producing excess levels of growth hormone and that I had acromegaly.

I felt quite relieved on the one hand with my diagnosis, because I said to myself, ‘we’ve finally figured it out’, and I hoped we could put the brakes on it. But it also amplified my fears. I had looked on the Internet and seen that acromegaly often remains undiagnosed for many years. So I was very worried.

Surgery was not recommended straight away as the doctors wanted to test out some treatments to see how I responded and to try to reduce the size of the pituitary tumour. However, I also consulted a neurosurgeon who advised surgery sooner as he was worried about my sight as the tumour was already very big and was pressing on my optic nerves.

I first had endonasal (through the nose) surgery three weeks later to try to free the pituitary gland from the tumour that surrounded it. I also had injected medication and a second surgery later on.

The most positive effect of the first surgery was an abrupt end to my snoring at night as it had completely cleared my nasal passages and I was able to sleep much better. The swelling in my face went down too, which also helped improve my self-image.

I try to remain optimistic. I think will power is very important to managing acromegaly. Although the diagnosis impacts your morale, it is important to set yourself goals in everyday life. I like travelling, so when I get back from one trip, I plan the next. It’s also about having the drive to continue working to the extent that you can.

Keeping your social life going is also important so that you do not ‘sink’. If you stay at home, if you withdraw, that becomes very complicated to manage.

The most important thing, I think, is not to stop doing what you enjoy, such as travelling and living how you want to live because of the illness. We must not shut ourselves away.