Living in the UK, i am consistently coming up against a lack of information, and co-ordination on information about AVM research,There are certain sites but i feel they are out dated, especially with regards to peripheral AVMS ( My daughter has a large diffuse cranofacial AVM ), If indeed there is any research being carried out in the UK !, especially if i compare this to the USA, who even have hospitals dedicated to the management and cure of AVMS . The AVM Survivors network has nearly 4000 members, with this support surely we all should be pressing for Novel treatments to be found solely for us AVMers or families with AVMers. Straying from the point slightly, I wish to hear from anyone in the UK with an AVM, As i am keen to start a Research Charity solely for AVMs, Lets try to push the issue, and raise funds, Sadly Research is being hampered by lack of funding with the more "Well known charities" taking centre stage because we are a minority .
Please contact me as surely im not the only parent in the UK who has a child with an AVM !, Lets press for change and build awareness .
wow! i was only just saying this to my partner! i have had to research my baby boys condition as noone has explained to me anything about an AVM! i have just got in touch today with the child brain injury trust to see if they can help me. i would just like somewhere to go where other people are going through the same thing! sadly there isnt anywhere near me that does this ! or anywhere else in the uk!!
Hi Thanks for replying, Thats what im setting out to do, a comprehensive site discussing , great doctors, hospitals, research topics,self help, as on our own we cant be heard together we will make a greater noise ! Please feel free to keep in touch with me as hopefully our site, will be up and running soon, are you based in the UK ?
We will hopefully use or site to raise awareness and raise specific funds with charity events ,we need understanding and a cure .
Hi, I'm really new to this site, but I'm from Leicester and my 10yr old daughter Emily is just recovering from a cerebellar bleed possibly due to an AVM. We haven't had the angio yet as waiting for the blood to disperse as it only happened 2 weeks ago. Em is making a remarkable recovery, but she still has dizziness and is weak on her left side. Phsyio is another story with the first appt being 30th March. But I've really struggled to find much information dealing with children, any information to pass on to her school for when she returns and even though I don't really know what we're dealing with, they have seen an abnormal vessel on the MRI. What all this means for Emily in the future we have no idea, and after the initial shock of finding out she had a hemorrhage, we're now trying to gain as much information as possible. A site for UK parents would be fantastic. She has been treated at Nottingham QMC as Leicester doesn't have paediatric neurosurgery. Any help or advice for a newbie very much welcomed.
Hi Claire My baby is being treated at Birmingham childrens hospital. My baby had a bleed in july when he was 2 weeks old and we have only just got the results back he has an AVM or DVA in and anterior to the left cerebellar! He also has physio every 4 weeks! i have found it extremely hard to deal with and also there has been a lack of communication between my hospital here in coventry and the birmingham childrens hospital which hasnt helped either! I have also looked at the childrens brain injury trust and they are looking at giving me info for groups or someone to talk in the west midlands area xx
Hi, I am from Northern Ireland and was diagnosed with an AVM a year ago. I am still awaiting treatment. Everything seems to be going at a snail pace. I have been told I will need 2 possibly 3 embolisations and then Gamma Knife Surgery in Sheffield as they don't do that here in Belfast. Sounds good what you are trying to achieve. Best of luck. Susan
Oh what a terrific idea! i would back it all the way! help to untangle this unknown mystery of avms. i have self educated myself on this topic over the past two year, with only support from family and the people on this site. . I am due for consultation to arrange an appointment for surgery at Glasgow! Theres no support what so ever to help people like us make decisions! good luck with your research and i pray for your family! Lv lynn x x x
Hi Guys, thanks for you positive responses , My Daughter Niki, who is 7 is on her third embolization, its a long road full of highs and lows, ( MORE LOWS AT THE MOMENT !) . So unless you yourselves have a child with an AVM , no matter how much people try to understand they will never be in that place of worry and uncertainty that actually overwhelms you and literally takes over your life, nothing else matters . There is alot of research at present ( as i am sure all you AVM GOOGLE EXPERTS ! WILL KNOW !)As when i found out over a year and a half ago my daughter had this thing called an AVM i searched intensely and surfed the net in search of answers, this made me even more depressed, as much of it was irrelevant and outdated but what struck me was that considering all the medical advances being made , THEY CAN MAKE A BLIND PERSON SEE, BUT AN AVM WELL THATS ANOTHER STORY. The uncertainty in my opinion is purely down to the fact that there has not been enough specific research being carried out so that a full understanding of an AVM is not yet known, this is my goal in life, find the people that can and should raise funds for and find novel treatments specific to AVMs . THATS MY SERMON FOR THE DAY ! I must rush as im going to see my daughter Niki in hospital as she is recovering from her 3rd AVM embo. Its a long hard road guys , but the more of us that take the same journey the quicker we will get to our goal. Take Care George ( NIKIS dad)
Hi my husband had a massive bleed 20 weeks ago due to an AVM on his brainstem, hhe spent 10 days in coma, 3 weeks intensive care, 7 weeks on a neuro ward and now has been in rehab for 2 months. I had never even heard of AVMs until my husbands bleed, and have to do all the reasearch myself. We live in Newcastle Upon Tyne
Hi George, I'm so touched by your words "So unless you yourselves have a child with an AVM , no matter how much people try to understand they will never be in that place of worry and uncertainty that actually overwhelms you and literally takes over your life, nothing else matters." This is exactly what I want to say too! I'll pray for Niki.
Hi I live in London. I know that there is research currently taking place called the ARUBA trial. I believe this is worldwide and there hospitals in the uk involved in this. I think this research is based on unruptured avms but it might be worth you looking at it. That national hospital of neurology and neurosurgery in london seem to know about avms (that is who I am currently under). Hope this helps. Wishing you well linda
hi susan best of luck in your treatment and believe me when i say this ask questions dont be fobbed off like i was now its a different situation as i am in a wheelchair so susan ask the questions of the group the doctors u have a right to know but at least susan you belong to the group and best of luck again in everything also susan i live in souhern ireland so i will be praying for you every night god bless mags
I think it is a wonderful idea what you are doing to help raise awareness in the UK. Other than this site I have not found any other ones that offer support especially based in the UK. I have tried a number of times to join avmsupport.org.uk however never get my application authorised. I know they do charity walks in the US and think it would be great if we could arrange similar things like this over here! I have an orbital AVM (presenting on the eyelid) which is being treated at the QEH in Birmingham. Let me know if there is anything I can do to help Caro
caro i sent numerous emails to AVM UK and they finally authorised my application 4 months after i intially requested to join! i did get an apology so maybe worth another email , although if im a little honest not many people go on there and they dont seem to have anything going on x
Hi I joined Avm support which a UK based group for avers. It was really easy to join and only took minutes. It is called avmsupport.org.uk. Hope this helps. Linda
Hi Caro i agree that we need a more proactive site similar to survivors , also. I feel that we AVMers are still sruggling with just how much relevant research is being carried out for novel treatments so we can finally find a cure . Embolic agents are good for management but the beast is still lurking in the background , has anybody else heard of any breakthroughs ?
Hi Iām located in Ireland but I have been thinking of something like this too. Think we have all become Google experts on this. Well done for taking the first steps and getting it out there. Looks like there is an interest from people on this site to help out. Iām an avm survivor of 20years now!!! :) I was only 8 when I had a massive avm bleed but I came through it with no side effects. If I can help out in any way to raise awareness please let me know. Would love to get involved in doing a walk or something to raise awareness over this side of the world. Any ideas?