Rory O'Brien - Written by Pauline, his mother

This is a story of mis-diagnosis by doctors, which concerns me greatly. Most people think that strokes only happen to old people but what's even more worrying is that doctors are not considering it as a possible prognosis and seem to be poorly informed.

Final diagnosis: Right Occipital CVA secondary to narrowing of the right vertebral artery

In October 2000, Rory and I were travelling back to Ireland for a weekend break with my parents. Before we boarded the plane, Rory complained that he had a pain in his neck but overall seemed quite well. I thought no more about it until that night when in his sleep Rory vomited and continued to vomit every twenty minutes throughout the night. He would tell me he was about to be sick but I would have to carry him to the bathroom every time as he was, drowsy, lethargic and disoriented. This continued the next day and he complained of a massive headache all the time.

I took him to the local hospital in Ireland where they checked his temperature, there was no temperature, tested his urine and it was normal, checked him for meningitis and after observing him for a couple of hours, concluded that he looked quite poorly but I should take him back home and if he deteriorated anymore I should return to the hospital with him. When I got home, Rory continued to lie on the sofa, vomiting intermittently, had a massive headache, and was generally disoriented. I noticed Rory's eyes started deviating upwards to the left for several seconds at a time. I took him for a walk outside but he was walking into things. By 7pm I was very concerned and decided to drive him to a larger hospital in Dublin - Tallagh hospital. I took Rory straight to A&E. They performed the same tests but again couldn't find anything. Whilst they continued to observe Rory, he suddenly had one of his episodes where his eyes started deviating to the left. The doctor concluded he was having some kind of seizure at which point everybody seemed to spring into action and I felt somewhat relieved because they stopped being dismissive and could now see that there was something wrong with Rory.

A CT scan was organised immediately. The CT scan was reported as normal but this was very unfortunate because on a second review of these scans at Addenbrookes hospital in Cambridge in April 2001, they found that abnormalities did show up but this was missed by the hospital in Dublin. At this stage, the hospital had started Rory on intravenous antibiotics. At 12pm that night, shortly after arriving in a bed on a ward, Rory had a major seizure and did not recover from it - he was in a coma. The doctor on the ward told me that Rory needed intensive care but they didn't have an Intensive Care Unit at Tallagh hospital, so they would have to transfer him to Temple Street hospital.

At Temple Street, Rory was put on a ventilator. Their impression was that Rory was suffering from encephalitis or meningoencephalitis. He was put on anticonvulsants, antibiotics and acyclovir intravenously. Rory came out of his coma the next day and was taken off the ventilator. He had a lumbar puncture, which proved negative for meningococal infection. Rory had an EEG, which showed what they called diffuse slowing consistent with viral encephalitis. The headaches continued for about a week. After two weeks, Rory was well enough to take back to England. One blood test showed herpes simplex type 1 and 2 and it was concluded by the doctors at Temple Street hospital that Rory's acute episode was secondary to acute viral encephalitis and likely caused by herpes simplex.

A subsequent EEG was performed in England and it was normal. Rory had made a full recovery and there were no physical disabilities. The doctors reassured me that viruses rarely reoccur and it was unlikely that this would happen to Rory again. I went home happy and relieved until April 2001, Rory came to me at 10pm one Saturday night, and said he had a pain in his neck. I was alarmed. We switched off the playstation and put him to bed. Early Sunday morning Rory came to me feeling sick. He started vomiting and as the morning wore on, he got drowsy, lethargic and disoriented. This was clearly a repeat of the symptoms from the previous October. I called several of the local hospitals to see which had a Neurology centre and an MRI. Luton & Dunstable (L&D) was the nearest. Based on Rory's history, A&E sent us to the admissions bay on the childrens ward. Rory lay on a bed here for five hours, he vomited but had no temperature, was too lethargic to get up off the bed and complained of a terrible headache. After many neuro observations, the Registrar concluded that Rory had a tummy bug and we should take him home but return to the hospital if he got worse. You can imagine my distress.

We had no sooner got home and put Rory to bed where he continued to vomit, when my husband put four fingers in front of Rory and asked him, "how many"? Rory said "one"! We were very alarmed and suddenly realised that Rory's sight was very blurred and he really wasn't seeing very much hence his disorientation. We went back to L&D where a Paediatric Consultant assessed Rory, admitted him, put him on anti-convulsants, antibiotics and acyclovir straight away, assuming it was a repeat of what had happened in Dublin. Rory had a poor night but was markedly improved the next morning and even had some toast for breakfast. The next few days were up and down with massive headaches and vomiting. It was difficult to control the headaches because he couldn't keep anything down. An MRI was done and it showed abnormality, but doctors were puzzled because it was not consistent with encephalitis. According to the medical report, the scan was showing increased signal in the right occipital lobe. Rory was transferred to Addenbrookes in Cambridge on the Thursday.

Addenbrookes was fantastic and Dr Parker got straight to work on Rory. Rory had an MRA of his neck and head with repeat MRI of his head. This showed what they called an infarct of the right occipital lobe of greater than 7 days duration. In other words Rory had had a stroke. In the context of Rory's age with a posterior cerebral circulation injury and prior to looking at the MRI, it was felt that is was most likely to be a vertebral dissection. However, the right vertebral artery in the back of the neck showed narrowing and was rather ribbon like which was not consistent with spontaneous dissection but was more consistent with a series of injuries to the neck.

We don't know exactly of any injuries that led to these episodes although Rory did slip on the hall floor the day before his second stroke. Rory himself believes that the playstation caused his neck pain. His feet don't touch the ground when he is seated and Rory tends to move and jolt his head with the motion of the game. After his stroke in April, we put the playstation away and banned it. As we weren't absolutely sure this was the cause, I took it out last weekend but after twenty minutes of play Rory said to me he had a pain in his neck so the playstation has gone away again. Fortunately, he was fine and no other symptoms followed. This is not the only thing that causes the neck pain. On two other occassions Rory has come to me saying he has a pain in his neck and on each occasion it has developed into nothing.

Tests by the the Optamologist at Addenbrookes found that Rory's has completely lost his left periphery field of vision. Apparently, as licensing laws currently stand, this means Rory will never be able to drive a car. If anyone has experiences of this, I would love to hear from them.

At this stage Rory is on half an aspirin a day and has made a great recovery. We are attending a stroke clinic at Great Ormond Street having been referred by Doctor Parker. They plan to do a further lumbar puncture, heart scan and more blood tests. Unfortunately there is a long waiting list and we expect to be waiting for months.

We still live from day to day and are afraid to travel too far away from home because we want to stay near Addenbrookes where they know his case. I don' think we are on top of it yet.

We always hear the bad stories about the NHS but comparing my experience in Ireland, I can only say that we are lucky here in England to have such a wonderful NHS service with such fantastic doctors and with considerable investment. In Dublin I asked them to give my son an MRI scan but the hospital doesn't have an MRI scanner and are trying to raise funds to purchase one. Things might have been quite different if they had the investment they so badly need. I was not completely happy with Luton & Dunstable but Addenbrookes was wonderful.

I know that Rory's particular kind of stroke is quite rare but not unheard of. I would love to make contact with anyone who has had similar experiences. Please feel free to email me or call me on 01727 84155.

Thanks to Pauline for sending in Rory's profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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