Angela, ACT

Aged 18, I experienced sudden deafness in my right ear, and I was no longer able to poke my tongue out straight, it only turned to the right. My ENT specialist found a tumour on the R carotid artery , and a Glomus Jugularis. It was radiated over about 6 weeks, then no further treatment, it was benign. The paralysis to the cranial nerves remained (deaf R ear, lack of full tongue movement ).
No change for 35 years, then I ate a large number of fresh raspberries, picked from my parent’s bush, which had been drenched with Tordon…..Agent Orange , the night before. The neighbour had poured it over the fence as he was ‘fed up ‘ with raspberry canes poking through the fence!
The following morning I awoke struggling to breath, pneumonia, and plus atrial fibrillation. No idea of why I became so unwell overnight……until weeks later the raspberry bush died, so too the plants around it! My father asked his neighbour if he had been spraying the plants as a few of his shrubs had wilted , and he admitted he did – the night before I picked and ate a large bowlful weeks before!

Since then I spent years with so many Doctors, Emergency departments, hospital admissions, each time being sent home with a diagnosis of ‘panic attack’, atrial fibrillation, respiratory infection. Still struggling to breathe, spending thousands of dollars travelling to see specialists in Sydney and Melbourne. 4 years later, dreading another visit to Emergency, to be told “I’m not sick enough to take up a bed , Go home”, I sat in the waiting room from 10pm until 5am, struggling to breath, until my daughter took me home and watched over me until it settled. I had ‘given up! Obviously not my time!

My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance. He suggested hormonal, not necessarily oestrogen and progesterone could be responsible.

I contacted a Doctor in Prince of Wales Hospital, Randwick, who was involved with genetic testing etc, as the carotid body tumour was recently found in my siblings. I was referred to Prof Robinson, Endocrinologist, who organised a PET Scan , and the uptake of contrast showed a Phaeochromocytoma above the right Adrenal gland, my Endocrine Surgeon removed this tumour but when it was touched it sprayed a good dose of whatever substance it had been secreting for years, and I ended with metastasis. It is now throughout my body. The diagnosis was made in 2006, the symptoms had been creating ‘havoc’ in my life for the previous 5 years with no one finding the reasons.

To have the carotid tumour etc stay benign for 35 years, then the night after swallowing the Agent Orange to become so unwell and end up now with tumours throughout the body , including the left side Carotid and Jugular, certainly shows a link. Sadly no cure, I’m still unwell. But at least I’m still here.