Phillip
Phillip had a TIA in 2008. His arm felt heavy and his vision was affected. He went to the GP next day, and 2 weeks later had a carotid endarterectomy (surgery on an affected artery). He is taking part in a TIA research study.
Phillip woke up one morning in 2008 and found his arm felt heavy, as if he’d slept on it awkwardly. When he got up, he noticed some perception problems picking things up accurately and knowing where his hand was. But after a while the symptoms went away and he cycled into town and had a normal day. When his wife came home from work that evening she told him he should see a doctor anyway, so he rang for an appointment next morning. He was immediately given an appointment when he explained what had happened and when his GP saw him she said it might have been a stroke. She referred him that afternoon to a specialist stroke clinic.
He went in on the bus, still not really expecting anything would be found. After a series of tests and scans, it was discovered that he had a 60% blockage from a furry kind of deposit or plaque’ in his right carotid artery, and it was recommended to him that he have surgery. There was then a discussion between the research team, who wanted him to have surgery urgently, and the surgical team, who said they had no spare beds for some months. Eventually a compromise was reached that surgery would be in 2 weeks. Phillip feels this would not have happened if he had not been in the research study.
Phillip and his wife did a lot of research on the internet, using their skills and contacts as professional researchers. He found it very hard to decide whether to have surgery the evidence seemed to suggest that if he was going to have another TIA it was most likely to happen in the next few days. But if he got as far as two weeks without another one the chances that it would happen again would be around 3%. The risk that the surgery might trigger another TIA or stroke also seemed to be about 3%. But eventually he decided that he could not live with the knowledge that he had such a substantial blockage and that at any time a piece of the plaque could break away and cause another TIA.
He found the surgery quite frightening and felt depressed for a whole afterwards. On the whole he thinks he has had excellent care, but he would like there to be more support after surgery, and wonders why surgeons aren’t more interested to follow up what has happened to their patients longer term. He is deeply interested in the research and would like more opportunity to be involved and ask questions, but he feels the research team are somewhat distant. It sometimes feels as though to them he is just another participant; they want to stick to their research protocol and not get too involved with individual patients. He can understand the need to ensure the study is conducted properly, but would still like to know more, as he feels research is so important.
Phillip recommends anyone who has any symptoms they can’t account for to go to their GP or go straight to the emergency department. Early response is vital.