Family Story Update Log

This page is for users reference, so you can quickly see when any new story, or updates to existing stories, have been posted to the site.

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22 Responses to Family Story Update Log

  1. Mette Thomas says:

    Does everyone mind just putting a message up and letting us know how old your VOG child is I have a 14yr old and would be interested to see if anyone has any child even close to his age.
    My child as I said is 14yrs his name is Joshua and was diagnosed at birth with cardiac output failure so therefor is regarded as a VOG stage 3. he was embolised at 3 days and had 5 further embolisation procedures before he was aged 3yrs. Josh’s VOG never reached a thrombosis so therefor still had some residual flow. All the vessels leading to the VOG were now too small to embolise safely so we had to stop and just live life and let him grow.
    – Fast forward to today and many complications later Josh’s VOG has started to steal blood again and his neurological and physical abilities have deteriorated and he is slowly going down hill. We are currently waiting for the Neuro-radiologist to decide if it is safe to start a round of embolisation again at a ripe age of 14ys.

    We are waiting for the yes or no from the Dr but know that is the answer is no after 14yrs of fighting with the VOG our fight will be over and the condition will be reclassified (in his case at least as a progressive condition), at this stage there is very little information on what happens when these children get older so any members on this group with older children could you please say hey as it is important we follow these older kids to see what the future holds for our kids.

    • Mette Thomas says:

      We have always been told that there is no reason Josh couldn’t live a normal life but now we are starting to worry that that may not be the case as Josh is the eldest surviving stage 3 VOG in Australia we have nothing to go on and now worry that they may be wrong. Can these kids kids lead a relatively normal life after VOG surgery ??
      Im assuming the VOG kids that have achieved thrombosis would have a more guaranteed outcome but as we have had residual flow we are concerned with the outcome. In my reading across the web the only info i have come across is that the coils don’t seem to have a very good life span and that they can move and change the situation over time. So we don’t know if this hick up is something that maybe all VOG kids could be prone to as they all grow in their teenage growth spurts??

      I guess in another 10 yrs of so we will def have a better idea of what to expect as most of your kids get older but right now it is a bit hairy for us to say the least, we have fought this VOG for 14yr i just cannot begin to imagine if it takes him now xxx

  2. Jenny says:

    Hi Mette,

    I have been thinking of you so much!

    How is everything going? have you heard back from the drs?

    Lots of love Jenny

  3. Mette Thomas says:

    Thank you Jenny, its nice to have someone comment here.

    Josh is doing ok !, his neurosurgeons think he is doing well I don’t agree he is deteriorating in his abilities to control himself and his emotions, he is really struggling.
    We finally got his testing done and are yet to get the results from them, I have been laying all our hope on the results of the tests but last thursday when we spoke to the registrar he said that he thought it was unlikely that anything would come of the tests and they had all thought there was a very slim chance that they would be able to do any more for him.

    i was shocked to say the least then came the shocker and he asked me how old is josh, I stated 14yrs and he said well you got 14yrs more than you expected !! what ! no you are wrong as mother i expected nothing less than a long life for my child.

    Our waiting game is until the 1st of september when we see the neurosurgeon and if we get the same answer from her then I guess we go over seas for a second opinion as I cant in full conscience as his mother not try every avenue possible before we give in.

    thank you for asking hope your child is doing well xxx

  4. Jenny says:

    Hi Mette,

    I cant belive the nerve of some dr’s, and how they actually get away with some of the things they say! You are 100% right, as a mother you need to search every avenue for your child, and if you cant find it there, well then you will just have to find in somewhere else! From what i have heard I believe that the best places are in the USA and France, if you read some of the family stories on this site they give the names of the hospitals and the drs who helped them. I dont understand why they wont do more embiolozations? what is their reasoning? surely if the “stealing effect” is setting in, it is a sign that they need to operate ? I wish it was legal to beat some sence into drs! 🙂 they are not always right!! and a mother knows when something is wrong!

    Unfortunately we lost the battle to this monster, our little angel Maddi passed away at 4 months!

    Keep strong! and remember you’re mom and, and we know when something is wrong! Dont give up, keep pushing!!

  5. Mette Thomas says:

    They will no longer do embolisations with Josh as the feeder vessels that are left are so tiny they cant work out if they also feed another important area of the brain so therfore wether it is stealing or not they dont want to risk him by embolising??

    I have moved on and figure ill leave them and their small mindedness behind and keep fighting for Josh, Looking overseas to see if they agree with our team. I dont want to push anyone to treat i they dont feel comfy doing it as we all know what happens then but I want to make sure every avenue is covered.
    Move over Dr B im checking out your options LOL

    Mette x

  6. Kate Da Silva says:

    Whatever you do don’t give up – my son is 6 years old – he is OK his name is Kai Da Silva – his story is on the site…. He has had a few things happen that have been making me a bit scared again – but whatever you do – fight and never give up your mother’s instinct as often as as a mother we are the ones that are right…….Where are you based?? Thanks Katexx

  7. Mette Thomas says:

    Thank you Kate, yes def will never give up. I already feel as though I have failed him by not taking him over seas before now.

    We had yrs of calm but then a few yrs ago little things started happening that you could never really put your finger on, I wish that I took him overseas then, but the recommendation from Dr’s here was that he was ok and to just keep plodding along. Its now I look back that i realise that the course the Dr’s here were taking was not one I would choose to follow, our Dr’s here believe in avoiding any medical intervention until ABSOLUTELY necessary, they believe the risks are just too high, now i see the damage his poor brain has suffered in the mean time and I wonder…

    We are based in Australia and although the Dr’s here are great they do not specialise in the condition of course and we don’t even have a paediatric neuro radiologist here so we have to see the adult neuro radiologist that deals with VOG kids here.

    We have just got advise from Dr B and have been told that he is willing to take Josh on as a patient, but still waiting on an email to figure out what he is wanting to do as there are a few options to treat Josh but some as far as the Dr’s here are concerned require just too much risk

    Mette x

  8. Kate Da Silva says:

    Hi there, Is there a story up about your son – if so, where can I find it? The names I know of are obviously the Pierre Lasjuanias the pioneer of all the vein of galen treatments – luckily our son has his magic touch shorly before he died. The other people that I am aware of are I assume the teams that worked with Pierre Lasjuanias in the French Hospital he worked for would be well-knowledgeable and they were based in Paris – but Great Ormond Street GOSH in UK are also very good we were lucky enough to live in UK at the time. The surgeon who did the third ventriculostomy on our son, after the Embolisation was Dr. Sylvia Gatscher and the Neuro-radiologist at GOSH who did angiogram on our son was Dr. Steffan Brew he is actually from Australia himself. Just some names for your information. Lynn Massaurd (pioneer of this support website) I am sure you have possibly spoken to her – would know all the ins and outs. How is Josh suffering now? I am also worried as there a few things that worry me at my son’s age of 6, but I have been told he is fine – but he has not had an MRI for a few years now. Hang in there. Love Katexx

  9. Mette Thomas says:

    No I haven’t ever written a story about Josh as its sooo long, I will however do it soon as it needs to be all down on paper (or computer)
    Josh suffers from so many things but most of the time they are not enough for anyone to take notice but things I notice and are worried about, he changes his behaviour ie he has more tantrums than normal. At the moment he is coughing and spluttering (choking) on food when he isn’t concentrating, he is probably doing this about once or twice a day for the past few weeks. On its own it isnt much to see a Dr about as there is nothing evidently wrong with him. His life is FILLED with minor changes like that that over the yrs eventually build to bigger things now that I look back. Its hard as his left arm he started holding it in a right angle and pulling it up to balance – that in itself was a minor thing but now 18mths later he is now stuck with it in that position and he isnt able to stretch it out.

    It’s hard as most of the changes can only be treated by their symptoms nothing else

    We are in the middle of organising with Dr B from NY to have him treat Josh, just a few more phone calls back and forth to secure funding and dates and we are off ……hopefully

    Mette x

  10. Kristina & Patrick McCauley says:

    Our names are Patrick and Kristina, we recently lost our daughter Emma after a 10 day battle with her VOG malformation and congestive heart failure. I couldnt help but read your posts and see that Dr. B is/or will be helping you! He performed our daughter’s embolization and is a wonderful man!
    Emma’s story in short, We had a perfectly healthy and NORMAL pregnancy (more so than with our first child) and only learned of her condition prior to delivery due to her breech presentation in which it was discovered via ultrasound. She was delivered via emergency c-section on 10/12 and was immediately taken away for testing as we were told she would not survive long after she was born. She weighed 7lbs 14oz and was 20 inches long. I stayed in the hospital for 5 days (slight complications from my surgery) all while Emma was transffered to two different hospitals. She made her way to St. Luke’s of Roosevelt, where Dr. Alejandro (Alex)Berenstein took her case and performed an embolization on her at 4 days old following an early morning MRI. I was discharged from the hospital the morning of her procedure and my husband and I were “sterilized” and allowed to see and kiss her on the operating table before the procedure. It lasted 7 hours and was the LONGEST wait of our lives….. We were given so much hope as the procedure was very sucessful! He did four blocks, the last one being the most difficult as the angle and size of the artery were tiny. According to him, this is the largest embolization he had ever seen in a baby her size and age. We knew we had a long road ahead, but again – we were hopeful.
    The next days brought a flurry of emotions as we watched and waited to find out what was next. She had a brain scan 2 days post, which yielded abnormal results. Another MRI was scheduled and we waited……. We met with the surgeon on Thursday to review the results and that is when we were told that her brain had begun to “melt” (that’s the lamen term as I forget the medical one used) We were told the decision to continue treatment was ours but that we should consider that nature could take its course before further treatments would be possible. I held my daughter for the first time that night and cried as I knew it would never happen again. She was already in the early stages of organ failure. We tucked her in and went home to our son, leaving her with my mom at her bedside. We saw her the next day for hours, which was the last time. She passed away Saturday morning 10/22.
    I have scoured the web looking for information about early detection and support from other VOG families… I read your stories and have been truly touched. Although I have lost my precious baby, watching her suffer for 10 days was nothing compared to having a life with her and then watching her decline. My heart truly aches for you and I wish you the BEST in your future trials with this. My husband and I have made a commitment to learning more about this as well as educating others about it as well. We will be working with our daughter’s surgeon to help raise money for his Embolization Research Fund, which we have had all donations sent in Emma’s honor.
    Dr. B and his team are amazing!!!! The man is a godsend and has dedicated his life’s work to finding a cure for this. We wish you the BEST of luck! Please tell him baby Emma’s parents say hello! We’ll hopefully see him soon.

    With sympathy and support,
    Kristina and Patrick M.

  11. Jenny says:

    Hi Kristina & Patrick!

    Im so sorry to hear of your loss, we too lost our little Maddison at 3 month of age due to VGM, also “melting brain”, her brain had completely shrunk due to lack of oxygen to the brain, we too had to make the terrible decision to let her go! something to this day i will never get over. For certain times in life there are no words, and that will be one of them. A lot of us chat on the facebook group page “vein of galen” join us if you would like to follow and chat to other parents, some are still fighting the fight and others like me, just keep up to date and chat to other parents. Its been 9 month since little Maddi passed, and their are times that it feels like just yeaterday and i cant even bring myself to get out of bed. Wishing you and your husband so much love and strength in this difficult time,

    Love Jenny xxxxxxxxxxxx

  12. Mette Thomas says:

    http://www.facebook.com/groups/5624487177/
    Kristina and Patrick,

    First of all take Jenny’s advice and join this grp I have been extremely proactive in looking for new info for Josh and his care for 14 yrs but in the short time I have been on this site i have learnt more just chatting to other parents. For the first time EVER I really feel as though there are other parents dealing with this as we are.

    For the first time in years I really cried after reading your email, Long ago when Josh was a baby I was loosing all my energy crying over and over again about what could have been what we lost etc (he was still in hospital, he was in hospital until he was 5 mths old) and I decided then and there only to cry when something happened and not cry at the if’s, because all my energy was being wasted on the “what if’s” . But this morning I cried, I just cannot believe that at this point in Josh’s life we have fought so very hard we are loosing him just before turning 15 yrs, never did we expect to be facing this battle we figured the battle had been won when he was a baby.

    Thank you for your email, it really has been lovely to receive we will continue to place our hope in Dr B’s hands and hopefully get the enormous amount of money we need to get there, we are looking at needing approx $142, 000 to get him and us there and complete all the surgeries, were that money is coming from is anyones guess at this stage. The Australian government may fund around $130, 000 of it but only if we spend an inordinate amount of time filling out pages and pages of paperwork that take 6 wks to process !! Seriously who can do that ? And of course thats only if they deem the application successful grrrrr

    Anyway hope to hear from you soon on the FB site

    • Renay moss says:

      Mette
      My name is Renay , I have a 12 year old son ,Kurtis who also has a vein of Galen malformation . I know this post was a while ago but if you still visit this site , I would really love to hear from you. We are from Australia also.
      Renay moss Nayknott@yahoo.com.au

      • vogadmin says:

        Hi Renay,

        Thanks for posting here. You might find a lot of people Are more active on the Facebook group. You can find them from our links page!

        Thanks

        The VOG Team

    • Greg Goepel says:

      hi my name is Greg my son has this condition also , he also was treated in australia which is where we are located , i am looking for ppl with more info re this condition as i dont seem to find much out easily thanks . my son is now 7 years old and seems like a normal kid of his age but due to the rare condition we cant seem to find infomation in relation to what happens to these kids in the future and doctors dont seem to know much about what the condition can affect in his development at school ect. thanks Greg G

  13. here says:

    If you dont mind, exactly where do you host your website? I am hunting for a good host and your web site appears to be quick and up all the time

  14. Miriam Mulroy says:

    Hi my name is Miriam Mulroy and I live in Australia, Victoria. My son has the VGAM and is starting to present with problems as he is now nearly eight and has been at school a couple of years. Reading your stories has made me feel a little less alone however a little more concerned and made me think much more about VGAM in relation to issues that are now presenting. I have put in a request to become part of your facebook group and would like to stay in contact and feel it is necessary to do so. I feel collectively we may hold more influence. I have found it frustrating by the minimal information available at times. Regards and hope to hear from you soon.

  15. Fiore says:

    Hi my name is Fiore and I live in the States. My fiance is 22 and has VGAM. He was diagnosed with it as a child (8yrs), got a shunt and has managed since then. From time to time he gets intense migraines, cannot see well, light sensitivity, high fevers and honestly, it becomes overwhelming not knowing what to do. It has been hard trying to find a doctor; most doctors just prescribe him normal medications, others don’t want to bother running scans despite his headaches. I also noticed they [the headaches] become worse when his stress levels are off the charts. However, his family and I are glad and thankful to have him here with us. He’s intelligent (graduating in computer engineering), is super tall (almost 7ft!!) and has a great sense of humor. When we started dating 4 yrs ago he told me that he had VGAM and I could not even notice/know. Sure, it’s a lifestyle change…we can’t ride roller coasters but that doesn’t bother me since I’m afraid of them anyways; we do low impact sports (no crossfit!), we have a hospital plan on what to do in case of an accident, continue to research on this condition and the impacts on adults, and most importantly: we make sure to look forward to the future together. His doctor told him he’s a ticking-time-bomb. Sometimes he avoids his appointments because he’s scared of what they might tell him. But it’s important to continue going to them despite the mini-heart attacks one feels as the door opens and the doctor appears with his chart. We talk about it, we cry about it and we make sure to tell each other each day that we love each-other.

  16. Kate Da Silva says:

    How would I find Doctor Sylvia Gatscher???

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