Treating Vein Of Galen

Mri scan of patient after embolisation

What can be done to treat it?

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.

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27 Responses to Treating Vein Of Galen

  1. Karen says:

    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?

    • vogadmin says:

      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.

  2. doaa says:

    best pediatric angio physician to treat my 5 yrs daughter with vein of galenby embolization. in france

    • VACARUS TUDORITA says:

      Buna,

      Imi puteti spune si mie la ce spital a fost facuta interventia, cat costa si ce presupune? Va multumesc din suflet!

  3. anca says:

    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!

    • vogadmin says:

      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.

    • vacarus tudorita says:

      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!

  4. tudorita vacarus says:

    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!

  5. Jenny Nelson says:

    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.

    • Tudorita Vacarus says:

      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!

  6. Jenny Nelson says:

    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.

    • Tudorita Vacarus says:

      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

  7. Jenny Nelson says:

    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

  8. Tudorita Vacarus says:

    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.

  9. Jenny Nelson says:

    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.

  10. Jenny Nelson says:

    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?

  11. Jade Gahan says:

    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 🙂

    • vogadmin says:

      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.

      • Jade Gahan says:

        Hi!

        Just thought I’d give you an update on my son.

        He is 3 and a half noe. Has recently been diagnosed with cerebral palsy which affects his right side of his body and his speech, but he is doing very well with all the therapists help. We have our check up with the paed in july and Melbourne check up next year sometime.

        He hasn’t needed anymore surgery since he was 22 days old. All the mri’s have come back with great news 🙂

        If anyone needs any help or support just shoot me a reply 🙂

        Kind regards,

        Jade.

      • vogadmin says:

        Hi Jade, thanks for the update great to hear your son is doing well!

        VOG TEAM

  12. pratap says:

    where we can do treatment of VGM please tell me

  13. Jenny says:

    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!

    • Trevor Houser says:

      i have seen them rated out like this before. how were you able to rank them? our son was just diagnosed with VOGM in San Francisco and is being looked at by a highly-respected team at UCSF. They’re supposedly one of the best, but we want options.

  14. terrie scarlett says:

    Hi my son is now 7 months old and he need 3 embloinazes so far, 1 st one at just 9 days old, second at 11 days old and 3rd one at 7 weeks old, frankie dose not have an check ups untill jan 2014, and thats by my local hosptail not yorkhill which frankie is under, I havent heard any concat from yorkhill hospital seen frankie waa discharged at 8 weeks old, and that makes me feel frightened that what if theres somethink wrong and frankie is not been kept a closer eye on, I was just wondering now offer should children like frankie bhave check ups, and as well could you explain more to me about this rare condtion as I still do not full understand it, and everytime I try to ring someone about it at this hosptails bo one ever gets back to me, frankie had an mri done in julyand havent even had any one explain the results to me or anythink, thanks

  15. Rachel says:

    Dear All, Just to share a hopeful story – my son had heart failure 10 days old in 2000. Diagnosed eventually with VGM and we lived in special care for 2 months. Dr Wendy Taylor performed embolization at Great Ormond St Hosp when he was big enough (6 months). after some months at home on medicine to drain fluids etc. He had one week after op where he screamed constantly. Thereafter he was fine – fact great. He crawled one week later and walked 9 months old. He went to grammar school and is very bright. He is nearly 17 now. He has recently bn diagnosed with Type 1 diabetes and I was vaguely wondering if any link (hence Im on this site again now) – but I’m guessing probably not. I am incredibly grateful to the amazing medical staff who have given my son a normal life and hope that he will go on to have a happy and fulfilled adult life. Choose your consultant carefully with this condition if you can as expertise is v important. So sorry to those who haven’t had the same outcome. I cannot imagine your pain. Love to all. Rachel.

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