This patient story reflects 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.
Bruce: I was diagnosed with acromegaly 13 years ago. I was prompted to seek some medical advice because of a dental issue. My bottom teeth was separating. My ordinary dentist couldn’t do anything about it and sent me to a reconstructive dentist. And it was the reconstructive dentist that did some research and told me that I probably had this condition and I should go to my GP straightaway and get their advice.
Alison: Some of the symptoms he had, like what I noticed it took a long time for them to come, you know, living with it every day you don’t notice it. But, you know, as it got towards almost diagnosis time, things had started to increase. He would come home, fall asleep on the couch every night, you know, like and just could not keep his eyes open, which was really unlike him.
Energy levels had waned a bit. The motivation wasn’t quite there. Memory was a bit of an issue at times, although he didn’t realise it at that time. He, you know, looking back on it now, there was moments where he couldn’t remember some conversations that he should have remembered. He has an amazing memory so that was odd. That was completely odd.
Unfortunately, we didn’t probably pick that up straight away, you know, until diagnosis. Facial features definitely I noticed his lower lip was getting very large. And that was, again, just before diagnosis that I was starting to think there was, again, an odd thing. He was gaining weight when he wasn’t really eating that much. And he had snoring, was dreadful and occasionally would stop breathing during the night, which was a little disconcerting.
Bruce: I never thought there was something specific wrong with me. I just thought there was maybe getting older, gaining weight. So I’d been to my local doctor. I’d pretty much known what he was going to say. But once I got confirmation, I was driving back home and I called Alison to tell her about the condition. So we’d had some pre-warning to it, but it was a shock to learn that it been confirmed.
Alison: The first thing I dwelled on was the fact he said the word tumour, which naturally rings bells in your… You know, alarm bells in your mind. So after we had our chat and he told me what the doctors had said and what the process was going to be, roughly, I hung up.
And I was sitting in front of the computer as I was doing some accounts and the first thing I did was go online and find out what I could about what this word actually meant. So I didn’t just sit on one site I went to multiple sites because I thought, you know, I wanted to make sure that all the information matched to what each of these sites was telling me.
Bruce: So when I was first diagnosed, I had my own business, so. And we were kind of just a single operator. So the only people I shared it was with my customers. And they were very supportive, they understood and they gave me some leeway and some time to get over the initial shock of the diagnosis. And then the operation, they were understanding of that.
Bruce: So after I was diagnosed with acromegaly in late 2011, I went to see an endocrinologist and he scheduled me to see a neurosurgeon and they scheduled in a transsphenoidal removal of the tumour in March in 2012.
Bruce: It went basically textbook and it was about a week in hospital. But the night after I was released and went home, I had some intense pain and Alison had to rush me back to the hospital. And it turned out that I had a low sodium event and that required that I had to go back in into the critical care unit for four days, but that it was managed. And I was released about a week after that.
Bruce: The effect of the operation was almost instant. I think after the operation, I dropped about seven or eight kilos very, very, very quickly. And a lot of my hands started shrinking back to normal. My feet started getting back to normal. Unfortunately, my teeth had already grown out and didn’t return to their normal position. So I had to get braces put in to get them back in the right place.
Bruce: The tumour I had I think was twentytwo millimetres and it’s largest point. And apparently they didn’t get all the tumour. So that’s, that’s still… I still have parts of that tumour in the cavernous sinus. And they weren’t able to remove all that.
Bruce: The treatments I have for acromegaly at the moment is I have an injection every four weeks. I go into the Royal Hobart Hospital, into the diabetes centre, and there’s the endocrine nurse that administers the needle into my bum. I think I’m up to, because of the length of time I’ve had the condition, I’m well over a 100 needles now.
Bruce: The side effects of the injection are minimal. When I initially took it, you get a lot of discomfort in the stomach. Takes about half an hour. I work quite close to the hospital. So I’m able to do it very quickly and just get back to work and get on with life, so.
Bruce: I had a mate who after the operation, he came in a few hours afterwards. I was in the critical care unit and he tried to make light of the position I was in and he saw that my nose had just been peeled open across my face and was, as he said, it was about a foot wide. And from that point on he calls me Flare because of the state of my nose, so.
Bruce: The only time I was sensitive to comments about my acromegaly was when someone would call me big fella. Not… Not… And I guess they made those comments making a judgement on how I look without knowing my condition. And that’s when I was…That’s when I was upset by comments.
Bruce: I don’t think I have symptoms of acromegaly anymore. And maybe that’s just because I’ve lived with the condition for so long. So to me now, it’s just it’s normal. It’s just it’s just my normal life.
Bruce: My advice for coming to terms with acromegaly is to do your own research. Find out more, but don’t get carried away with a lot of the information. I find that the best source of information is your endocrinologist.