Lynn and Bob Mussard the owners and driving force behind this site were invited to attend a presentation by world reknowned VOGM expert Dr Karel Ter Brugge at the yearly meeting of the UK Centres for treatment of VOGM. Dr Edmund Jessop (medical adviser for the National Specialised Commissioning Team) kindly wrote a report of the rest of the days events and we are reposting here for all those interested:
The two UK centres for treatment of Vein of Galen malformation meet each year to discuss cases and share experience. This year Great Ormond Street hospital hosted the meeting. A particular highlight was the attendance of Dr Karel Ter Brugge, the internationally renowned expert from Toronto, who participated in the case discussions and gave a lecture.
The morning session opened with a review of all cases treated at Glasgow and London since the last meeting. Particular themes which emerged were the use and interpretation of magnetic resonance imaging (MRI), drug regimes before and after procedures, and the use of genetic tests. There is increasing evidence that a small proportion of cases of Vein of Galen malformation may be caused by a genetic mutation. If true (more research is needed) then it will be important to identify cases which are caused by a mutation because it means the disease may affect other pregnancies in the family. Even if this is true, familial cases are extremely rare, with almost all cases being sporadic.
After lunch Dr Ter Brugge gave a lecture to a packed seminar room. His talk covered all malformations of veins and arteries in the brain, not just the Vein of Galen malformation. He emphasised the difference between, on the one hand, the malformations which present in infancy or childhood, and on the other hand, those which present in adulthood. The childhood malformations have different origins and different treatments – as is often heard in children’s hospitals “Children are not just small adults!”. Dr Ter Brugge also encouraged his audience to think about what was happening in the wall of the blood vessel: for some types of malformation (not Vein of Galen) we can fix or block the abnormal flow of blood but the disease process continues in the wall itself.
The final seminar of the day reviewed a number of difficult problems in the management of Vein of Galen malformation. Again there was good discussion between the experts from Glasgow, London and Toronto.