Replies to This Discussion

Permalink Reply by hch on February 9, 2012 at 10:13am

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!!

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Permalink Reply by George (Nicoles Dad) on February 9, 2012 at 10:39am

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 .

Kind Regards

George

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Permalink Reply by hch on February 9, 2012 at 11:03am

yes im from coventry , i will keep in touch :)

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Permalink Reply by claradee on February 9, 2012 at 11:18am

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Permalink Reply by claradee on February 9, 2012 at 11:25am

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.

Clare

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Permalink Reply by hch on February 9, 2012 at 12:09pm

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

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Permalink Reply by SUSAN on February 9, 2012 at 3:45pm

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

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Permalink Reply by MARGARET MC HALE on February 11, 2012 at 4:02pm

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

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Permalink Reply by Lynn Anderson on February 9, 2012 at 6:48pm

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

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Permalink Reply by George (Nicoles Dad) on February 10, 2012 at 3:16am

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)

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Permalink Reply by Jessica J on February 10, 2012 at 1:46pm

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.

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Permalink Reply by cullenbabe on February 10, 2012 at 6:06am

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

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