Submit your story!

Your story may help others so please consider sending it into us! If you would like your family story featured on this site, please send us an email with the following information:-

• Your story saved as a text file (Word, Notepad etc).
• Your name
• Your location
• The name of the person who the story is about
• Their Date Of Birth
• A maximum of 5 photographs (300×300 pixels minimum, if possible)

Please send your emails to veinofgalenuk(at).gmail.com replacing (at) with the @ symbol. (We have not included our email as a link on here to minimise spam).

If you have any other queries about the site or about vein of galen malformation in general, we would be happy to help you. Please get in touch via our contact form.

The full list of family stories published on this site is available here

Vein Of Galen Study Day – 14th December 2011

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.

Happy new year!

A very happy new year to all our website users from all of the team here at Vein of Galen UK. We hope you have all had a good christmas and wish you all the very best for 2012.

A quick announcement: We have finally got the new forum up and running following the poll that we ran on here a few months ago. We invite all of you that were interested in participating in forum discussion to visit: the new forum here

You will need to sign up and register to post on the new board. There is a suggestions forum where you can make any suggestions for how YOU would like to see the forum grow and develop. Although we may not be able to respond immediately, please rest assured we are listening and your input is very welcome. This site and the forum were set up to help YOU and without YOU we would not be able to continue to grow and give support to countless families around the world.

2011 was an excellent year for this website, with over 25000 visitors and an average of 2100 visitors per month. Hopefully we can continue to improve the site in 2012 and we will continue to try and ensure our site is the number one resource for information and support for this devastating condition. Having a vibrant and active user community on the forums will be another way in which we can deliver that. Please note however that if you don’t use it, it will be closed for inactivity by the owners of the forum hosting space.

Your feedback is always welcome, so please either post on the forum or send us a message through the content page on this site.

thanks!

The VOG Team

Vincent Koch

Vincent’s Story

Born October 31st, 2010

I was pregnant for the first time and had my third ultra-sound scan on August 27, 2010 (29th week), when my gynaecologist told me that there would be an “abnormality in my child’s brain”. I was totally devastated and very afraid. He presumed that my son had an arachnoidal cyst and so we were sent to the antenatal unit at the University Clinic in Frankfurt to have a more specific ultra-sound scan.

Support forum poll. Please vote if you use this site.

Visitors to this site who used the old site will know that there was a popular message board on there. When we moved to this site, we created a new message board but this was not used anywhere near as regularly and was unfortunately removed by the forum hosting company due to inactivity.

After thinking about this, and inspired by Kate Da Silva’s comment on the “did you know we have a forum” post. We thought we’d put it to the vote. It is you, the users of this site, that the forum would be for after all. If you want it, I will happily create a new one. If you guys think this site does the job well enough then again please vote.

We would encourage you all to please vote and welcome any comments.

Thanks very much,

The Vein Of Galen Support team

Family Story update log added

Just a note to let everyone know that under the family stories heading on the main page, there is now a link to the family story update log. The family stories are one of the most important part of this whole website in my eyes. They are what make it unique and so many people get comfort from reading about the stories of others who have gone through similar experiences as their own. From now on, any new stories or updates / changes to existing ones will be logged on this new page so that visitors to the site and those families who have submitted stories, can quickly see when their changes have been published to the main site.

I hope this is useful for everybody!

Graham (site admin).

Uma Maheswari

Uma’s Story Born October 13th, 2010 Myself Salini and my husband Ajay Kumar got married in Aug 2006.I became pregnant for the 1st time in April 2007. But it was a vascicular mole. 2nd pregnancy was in Dec 2007. That … Continue reading →

Alfie Dale

This gallery contains 6 photos.

Alfies Story I found out that I was expecting identical twins at my 12 week scan and with no history of twins in our family this came as a very huge shock. Due to the complications that twin pregnancies can … Continue reading →