Mri scan of patient after embolisation
Fortunately nowadays this condition can be treated and children stand a very good chance of a normal development. In the past neurosurgeons have tried to obliterate the abnormal communications by tying off the shunts, but results and outcomes by this technique were often very bad. Nowadays, it is possible to enter the blood vessels by travelling with tiny plastic tubes up from the baby’s artery in the leg and depositing a glue in the abnormal shunt to shut it off. Sometimes several procedures are needed to shut off all the communications. This is usually done over a period of months whilst the baby is under two years of age.
Who can treat it?
This is highly specialised work and very few people have much expertise in its management. Many doctors who face the challenge of such treatment have only ever seen one or two cases and, although they have experience in the guidance of catheters in adults and sometimes children, there are extremely few who have accumulated good experience.
Good results depend on understanding the disease and assessing the technical and medical challenges. Good management depends on excellent interdisciplinary teamwork with anaesthetists, intensivists and paediatric neurologists. This experience has only been accumulated in one or two units world wide.
my grandaughter is presently in hospital and has recently been treated for Vein of Galen, i would like to know where exactly is the vein located in the brain, will she have to take medication for the rest of her life?
Hi Karen,
The vein of galen is a deep internal cerebral vein and is actually made up of two veinal structures. For an in depth explanation you can refer to this link:
http://en.wikipedia.org/wiki/Veins_of_Galen
As to the question of whether she will need to be medicated for the rest of he life, individual cases can be very different and it would be improper of us to give an opinion. Your granddaughters doctor will be able to advise on this!
We are vey happy to provide support and can direct you to different groups who can also offer advice and support. If you have any further questions please contact us through the contact page on this site.
We wish your family and especially your granddaughter all the very best.
best pediatric angio physician to treat my 5 yrs daughter with vein of galenby embolization. in france
Buna,
Imi puteti spune si mie la ce spital a fost facuta interventia, cat costa si ce presupune? Va multumesc din suflet!
Buna ziua. Am si eu o problema : am un copil de o luna si mi s-a depistat din luna a VII a de sarcina ca are anevrism cerebral de vena galen. Ma puteti sfatui unde ma pot duce si cat m-ar costa investigatia asta? Se poate vindeca? Poate creste normal si sanatos, daca se poate face ceva?
Va multumesc ! Astept raspuns! Sunt disperata!
Hi,
Unfortunately we are an English run site and haven’t been able to successfully translate all of your question. From what I have been able to translate of your question, my best advice would be to consult a medical professional but I am not sure how things work in Romania with the medical profession and how easy this is for you to do. If you speak English or have a friend / relative who does, perhaps you can send an email to voghelpuk@gmail.com and we will try and give you more specific help.
Buna Anca si eu sunt insarcinata in 7 luni si mi s-a depistat anevrism vena Galen. Imi poti spune te rog tu ce ai facut pt a iti trata fiul si cum se simte? Iti multumesc din suflet!
Hi, am pregnant and I was 33 sapatamani baby discovered a vein of Galen aneurysm. What would you do with your boy? Where have you treated? How much it cost? How is she now? Thank you very much!
Hi Tudorita,
We found out our baby had VGM at 36 weeks, we are based in South Africa, and had very little resources. Where about are you based?
I am from Roumania.
The best advise i can give you, is to find a dr who specilises in VGM, even if he means going to France or America, where they have hospitals and drs who can help you.
Thanks for the reply. How is your baby? Where have you treated? Which hospital and which doctor? How old was your baby when she was done embolization? What size was the aneurysm? And how much it cost? I am sorry to ask so many questions but I want you to know as much for the good of my daughter. Thank you!
Unfortunately we dont have a happy story! my little angel passed away on the 11 February she was 3 months old. She was fine for the first month, and then started showing signd of distress, her first embolization took place when she was 1 month, and they closed 2 feeders, and she had anothe op 2 weeks later where they closed 4 feeders, we were sent back to another hospital, were they misdiagnosed her condition, and was left untreated for a month, were she got progressivly worse. her barin suffered severly, and showed severe brain damage, we then made the very difficult dession to take her off life support. We had private medical aid in South Africa, which we pay every month, so our medical aid paid for all the treatments. The only advise i can offer you is to get to a hospital or dr that specialises in AVM, as we lost of baby due to lack of knowledge, if we had been in a different country our baby would still be alive and well. From reading other parents stories, there is a hospital in America and France that seem to have the best outcomes. if you contact the lady who hosts this website she will be able to tell you where to go in America. If i knew what i know now, i would have gone straight to America and given birth there at the hopsital where they specilaize in these cases, i think that will be your best bet.
Dear Jenny, I’m terribly sorry for your daughter. It turned into an angel that will be strong when you get back to you again. Do you have other children? Good health and strength!
ListenRead phonetically
Thanks, its been extremely difficult, we miss her terribly, we are so angry that we didnt go overseas to have her, and that is why im trying to let people know, that they must try and get to the best drs overseas, as i wouldnt want anyone to go through what we did. We have another little girl who is 3 years old. when is your baby due? have you spoken to drs there? what do they say
I am 36 weeks pregnant and so far everything is fine, except for an aneurysm, I give birth in Romania and at 5 months we go to France for embolization.
are you in contact with a dr there? please just keep an eye on her, as things can go bad very quickly, another friend of mine, her son had an embolization within 48 hours as he deteroited very quickly. Maddi ( our daughter ) was fine at birth and they were only going to do the op when she was 6 months, and then she started getting sick very quickly. Please just have a back up plan for her. Have you read the other stories on this side? iv written Maddi’s story but havent put it on the site yet.
Hi Tudorita,
I have been thinking about you a lot, and hope that all is going well your side. Have you had your little one yet?
My son was diagnosed with VGM when he was 17 days old. Doctors thought he had a heart murmer as the first x-ray showed that he was in moderate heart failure. We are in Australia and got flown straight to Melbourne where he was treated for VGM and operated on by Dr. Peter Mitchell, very wonderful man/Doctor. My son had an aneurysm the size of an egg with about 10 feeders, which 2 were very large, those 2 feeders were blocked in one procedure that took 6 and a half hours, but it was successful in the end. He will have to have head circumference checks every week as well as MRI’s every 3 to 4 months and might have to have more coiling/glueing done in the near future when he his 8 or 9 months old. He is 3 months old now and he doing so well, although we dont know if he has brain damage yet he is certainly reaching all the milestone a baby at his age should be
Hi,
It is wonderful to hear your son is now doing well. If you would like your full story to be included on our site, we would be happy to publish it. Please contact us via the contact page or view the “submitting your story” post on the front page of the site.
All the best to you and your family
The VOG team.
where we can do treatment of VGM please tell me
Hi Pratap,
Where about do you live, the main centres that i know about are:
Dr Stefan Brew – Great Osmand Street London ( GOSH) – Seems to be the best
Peter Mitchell – melbourne Australia
Yorkhill Hospital – Glasgow Scotland
Prof Fourie – Pretoria South Africa
Dr William Bonk – Childrens national medical centre in Washington DC
http://www.vogmparents.org
http://www.facebook.com – vein of galen group
Hope this helps!