Louis Trupia

Louis’ Story

Born June 13th, 1996

He was a perfect baby, an absolute angel, but looking back now, all the signs were there that all was not well. From being a very healthy birth weight Louis soon dropped down two lines on his centile chart, and he slept most of the day. He hated to crawl but we taught him how, and he was walking at 11 months, although his balance wasn’t brilliant. He was very calm and quiet and didn’t speak, but he had ‘glue ear’ so it wasn’t surprising. By the age of two he wasn’t sleeping so much and was reaching all his milestones. However, during a visit to our GP regarding eczema, he expressed concern over Louis’ head size and the prominent veins on his forehead. When measured, his head circumference went off the top line of the centile chart. Next day we were referred to our local hospital who told us there was nothing to worry about! Life carried on as normal and Louis started school at four and a half years old.

I had known for some time that Louis had a whooshing noise inside his head which could be heard if you put your ear to his temples. Because of this I went to my GP again in March 2001, when Louis was nearly five years old, we were referred to Great Ormond Street. Eventually the diagnosis of a Vein of Galen Malformation was made in October 2001. His heart is enlarged and working very hard, but is coping well, and he has mild hydrocephalus. We have been told it is amazing he hasn’t suffered any real symptoms.

Louis’ first embolisation was carried out by Prof Lasjaunias in Paris in March 2002 and was a great success. He was actually back at school just five days later! He is much more lively, has better concentration, is doing really well at school and says the noise inside his head has gone. His second embolisation will be in September 2002.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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2 Responses to Louis Trupia

  1. Peter says:

    Our son also has Vein of Galen. He has had treatment at Great Ormond Street and his treatment continues. We hadn’t noticed before, but he had a whooshing sound in his head. While we knew this happens with VoG we hadn’t noticed it before and indeed it only lasted 20 minutes while he was sleeping. I and my wife were just wondering whether this whooshing noise happened all the time with your son or only now and then. Thanks in advance for any information that you can share.

  2. Melody Trupia says:

    Hi Peter, I’ve not been on here in years and have only just seen this. Louis had the bruit constantly but it disappeared completely after about his second embolisation (I think). Louis continued with embolisations in Paris until Prof Lasjaunias sadly passed away, which left us with the dilemma of what to do next, as we knew he needed further embolisations, and didn’t know who to turn to. Following lots of research I contacted Dr Berenstein in New York, I sent Louis MRIs and after review Dr B said he thought Louis needed to be embolised sooner rather than later. Luckily we were fortunate enough to be in a position to fund the trip from the UK ourselves, US$61,500. We made our first trip to New York last August (2011), where Dr B carried out two separate embolisation procedures within three days. We returned to NY at the end of January this year (2012) for embolisation number 8, this time Dr B used a substance called ONYX instead of glue, Louis was up on his feet three hours after the 6 hour operation. He was back to school just FOUR DAYS after the embolisation. Louis will be 16 years old in June, he is currently studying for his GCSEs (predicted A* grades in all subjects). He has won a place at a fantastic school for sixth form to study his A levels, History, Geography, Philosophy and Economics, and is determined to go on to University from there. He will probably need to visit Dr B one more time for angiogram and possible final embolisation at the end of 2012, so finally the ‘cure’ is in sight!

    How old is your son and how is he? Where do you live?

    Please join us on Facebook ‘vein of Galen’ page, where you can speak to lots of other parents and get great support and information. You can contact me directly at melodytrupia@hotmail.com

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