When the brain misfires: a chance encounter with a specialist revealed the truth about Liane Arno's bizarre synptoms. By Liane Arno
WHO knows how long I have had a tumour in my brain but it looks like it has been years. Slowly and surely this tumor has been affecting the growth hormone secreted by the pituitary gland. Not for me to grow taller (I am still 5 foot 3) but broader.
Incrementally my skeleton has been changing. When we first took over the pub (now 20-odd years ago) I noticed that my feet were getting bigger. I could no longer fit in the high heel shoes that I had worn in my corporate career. As I had also put on some weight I put it down to the fact that fat must distribute itself around the body as a whole and I was obviously on my feet far more as I served behind the bar.
WHO knows how long I have had a tumour in my brain but it looks like it has been years. Slowly and surely this tumor has been affecting the growth hormone secreted by the pituitary gland. Not for me to grow taller (I am still 5 foot 3) but broader.
Incrementally my skeleton has been changing. When we first took over the pub (now 20-odd years ago) I noticed that my feet were getting bigger. I could no longer fit in the high heel shoes that I had worn in my corporate career. As I had also put on some weight I put it down to the fact that fat must distribute itself around the body as a whole and I was obviously on my feet far more as I served behind the bar.
Not earning the big money that I used to earn in corporate life I stopped buying shoes from Peter Shepherd and instead bought them from Big W. I put the increased shoe size down to the fact that the shoes were made in China and we all know how their XLs are our Ms. Finding shoes that would fit over the years became more and more difficult but as we travelled to Cambodia regularly for our volunteer work I would have shoes made for me. At a recent beach BBQ where everyone kicked off their shoes to feel the sand under their feet I looked down at my feet and hurriedly put my shoes back on again over my ‘hobbit feet’. My feet are now 11EEE.
Always “big boned”, whenever we volunteered in Asian countries I would have fun with the locals comparing my hands with their slender hands. But lately I had noticed in Zoom meeting when the meetings ended and I gave a wave that my hand seemed to take up the whole of the screen. Last night I compared my hand with Matt’s (who is a Collingwood 6 footer) and found that our hands were the same size.
I had been to the doctors some years ago to complain about joint pain and he suggested that I could lose some weight. I agreed but said that I was never going to be within the normal BMI scale as I was so big boned and showed him my hands as a demonstration. He wasn’t convinced that it made much of a difference.
A couple of years ago I was volunteering in Papua New Guinea and the Country Manager of the organisation in which I was working commented on how it would be useful in class to talk about my experience as a First Nation person of Australia. I told him that I wasn’t and he apologised and said he assumed I was because of my nose. Not one to look too closely in the mirror I realized that my nose had grown bigger but wasn’t overly concerned as I recalled years ago when doing an art class drawing people as they aged that the tutor said that the nose will appear larger as we age. In addition I have suffered from rosacea and I mentioned to the dermatologist that I thought my nose was getting bigger. He said that it may well be as there may be thickening of the skin.
The doctor that had finally after many years of other doctors not recognizing my rosacea was the one who performed carpal tunnel surgery on both my hands. I queried at the time why I should get carpal tunnel as I didn’t fit the criteria for those who would normally need treatment. I had worked as a manager and had not had a job with repetitive hand and wrist movements. He couldn’t explain.
I have always had good teeth but had a couple of molars taken out some years ago. It seemed that my front teeth were readjusting to the change and were being pushed forward. I also often work lying flat on the day bed and thought I must have been putting some pressure on my jaw that seemed to be getting larger. That would explain why I hadn’t worn lipstick for the last few years as my lower lip seemed to be pushed out and I didn’t want to draw attention to it.
Matt went to have his hearing checked the other day and they found that his higher register was lacking. The audiologist quipped that it mightn’t be a bad thing as it meant he wouldn’t hear if his wife was getting angry with him. Matt pointed out that I had a deep voice and on listening to some recordings that I do for the volunteer work found that it had been getting deeper.
And then all these years I have been getting headaches which I had put down to sinus problems, not to mention a bit of sweating (long since ceased after menopause) which I thought was me being “sympatico” with Matt as he had hormone treatment for his cancer.
All symptoms so readily explained or thought inconsequential.
That changed with a chance meeting with one of Matt’s specialists where he bravely asked me how I was going. I thought he was asking about my mental health given Matt’s problems but no, he had noticed some of the indicators of a rare disease called acromegaly, which causes swelling of soft tissue like the lips, nose and ears and enlarged bones in the skull, face, jaw, hands and feet. Those who have known me over the years have missed it as the changes are so gradual.
Always “big boned”, whenever we volunteered in Asian countries I would have fun with the locals comparing my hands with their slender hands. But lately I had noticed in Zoom meeting when the meetings ended and I gave a wave that my hand seemed to take up the whole of the screen. Last night I compared my hand with Matt’s (who is a Collingwood 6 footer) and found that our hands were the same size.
I had been to the doctors some years ago to complain about joint pain and he suggested that I could lose some weight. I agreed but said that I was never going to be within the normal BMI scale as I was so big boned and showed him my hands as a demonstration. He wasn’t convinced that it made much of a difference.
A couple of years ago I was volunteering in Papua New Guinea and the Country Manager of the organisation in which I was working commented on how it would be useful in class to talk about my experience as a First Nation person of Australia. I told him that I wasn’t and he apologised and said he assumed I was because of my nose. Not one to look too closely in the mirror I realized that my nose had grown bigger but wasn’t overly concerned as I recalled years ago when doing an art class drawing people as they aged that the tutor said that the nose will appear larger as we age. In addition I have suffered from rosacea and I mentioned to the dermatologist that I thought my nose was getting bigger. He said that it may well be as there may be thickening of the skin.
The doctor that had finally after many years of other doctors not recognizing my rosacea was the one who performed carpal tunnel surgery on both my hands. I queried at the time why I should get carpal tunnel as I didn’t fit the criteria for those who would normally need treatment. I had worked as a manager and had not had a job with repetitive hand and wrist movements. He couldn’t explain.
I have always had good teeth but had a couple of molars taken out some years ago. It seemed that my front teeth were readjusting to the change and were being pushed forward. I also often work lying flat on the day bed and thought I must have been putting some pressure on my jaw that seemed to be getting larger. That would explain why I hadn’t worn lipstick for the last few years as my lower lip seemed to be pushed out and I didn’t want to draw attention to it.
Matt went to have his hearing checked the other day and they found that his higher register was lacking. The audiologist quipped that it mightn’t be a bad thing as it meant he wouldn’t hear if his wife was getting angry with him. Matt pointed out that I had a deep voice and on listening to some recordings that I do for the volunteer work found that it had been getting deeper.
And then all these years I have been getting headaches which I had put down to sinus problems, not to mention a bit of sweating (long since ceased after menopause) which I thought was me being “sympatico” with Matt as he had hormone treatment for his cancer.
All symptoms so readily explained or thought inconsequential.
That changed with a chance meeting with one of Matt’s specialists where he bravely asked me how I was going. I thought he was asking about my mental health given Matt’s problems but no, he had noticed some of the indicators of a rare disease called acromegaly, which causes swelling of soft tissue like the lips, nose and ears and enlarged bones in the skull, face, jaw, hands and feet. Those who have known me over the years have missed it as the changes are so gradual.
"Matt and I were laughing with our doctor that we must be the rarest couple in his surgery as both Matt’s and my conditions are so rare." |
The specialist prompted me to have some tests done which confirmed his diagnosis. Apparently around 50 people in Australia are diagnosed with acromegaly every year. It’s caused by a tumour on the pituitary gland. The tumour is not malignant but it needs to be removed as it will start to affect the optic nerve, which is the last thing that I want given Matt’s condition. Then it really will be the blind leading the blind.
The skeletal changes to my body are permanent but hopefully the changes to the soft tissue will be reduced. And the complications that non-treatment would bring, such as heart disease, diabetes, and certain types of cancer, will be erased.
Matt and I were laughing with our doctor that we must be the rarest couple in his surgery as both Matt’s and my conditions are so rare.
And both conditions could have been caught earlier had we known more and been more questioning about changes to our bodies. When I hear about the number of people who are refusing vaccinations today, putting our society at risk, I wonder whether human biology should be a compulsory subject in schools. Perhaps then more people would understand the rationale for vaccinations and more early diagnosis of conditions may occur.
What subject could it replace? Calculus? Now that has proved very useful in my life! Sorry Robyn – you would probably not agree!!
The skeletal changes to my body are permanent but hopefully the changes to the soft tissue will be reduced. And the complications that non-treatment would bring, such as heart disease, diabetes, and certain types of cancer, will be erased.
Matt and I were laughing with our doctor that we must be the rarest couple in his surgery as both Matt’s and my conditions are so rare.
And both conditions could have been caught earlier had we known more and been more questioning about changes to our bodies. When I hear about the number of people who are refusing vaccinations today, putting our society at risk, I wonder whether human biology should be a compulsory subject in schools. Perhaps then more people would understand the rationale for vaccinations and more early diagnosis of conditions may occur.
What subject could it replace? Calculus? Now that has proved very useful in my life! Sorry Robyn – you would probably not agree!!