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Comment by George (Nicoles Dad) on May 16, 2013 at 9:03am

The Butterfly AVM Charity, will have a stand at The Groveland's Park Centenary Festival this weekend, raising funds for AVM Research, Awareness & Support . Come and see us If you can :)

http://www.n21.net/whats-happening-grovelands-centenary-n21.html

Comment by Jaycee on April 17, 2013 at 6:39am

Following 2 embolizations in her right foot my daughter Mia is now in more pain than ever. She has a large ulceration on the back of her foot from where she has had several arterial bleeds. Great Ormond Street Hospital now say that they cannot do any more embolizations for fear of doing more damage. Mia cannot wear a shoe on that foot and cannot walk. She is suffering with pain most of the time. The bleeds will continue if this area stays open. We are so anxious and feel we are going up stream without a paddle.
Has anybody else got or had anything similar or know how these ulcerations can be healed?

Comment by richwag on April 17, 2013 at 2:46am

Surgery done and out of hospital. I have updated my profile with my avm surgery so feel free to have a read. It's not much but I will give more detail if any one wants to have a better insight into surgery if your making that decision to have it or not. I'm positive and doing well

Comment by George (Nicoles Dad) on April 11, 2013 at 4:24am

THE THAMES PARK CHALLENGE !
The Butterfly AVM Charity has just registered for The Thames Park Challenge, so if any of you feel fit and want to raise money for The Butterfly AVM Charity , have a read below ,

14 - 15 September 2013
The Thames Path follows England's best known river for 184 miles (294km) as it meanders from its source in the Cotswolds on through the bustle of the City of London, to the Thames Barrier. Our Challenge heads West, starting out from the urban jungle of London at Fulham Palace through some of the most historic and picturesque towns in southern England.
In 2013 we have introduced more route options as well as a dedicated running section to the challenge – to allow for you to take on the event with suits your personal goals and ambitions!
100KM
• Putney to Henley. A tough 24 hour endurance walk or Ultra Marathon run!
50KM
• Putney to Runnymede. A daytime walk or marathon plus run.
• Runnymede to Henley. A daytime walk or marathon plus run - or a night-time walk!
For more details just click links below and find The Butterfly AVM Charity on the list
www.thamespathchallenge.com/page.php?content_id=30&page_id=3

Online Registration Form

www.thamespathchallenge.com/register.php

Comment by richwag on March 20, 2013 at 11:12am

Hi , I'm having surgery on the 9th April for brain avm removal (angiogram pics on my profile)
I often read about avm survivors being torn between surgery and radiotherapy (gamma knife)
Providing I have Internet at the hospital I will let you know about my experience
I will be at the Walton centre in Liverpool .....eeeek

Comment by Bronagh on March 10, 2013 at 1:06pm

Ah hang in there Jo, it is disapointing to get that news, I got similar news after my radiosurgery, that was over twenty years ago and I'm still here, and it may yet shrink. I hope you give yourself a treat this week to take care of yourself, you deserve it, blessings

Comment by Jo McKenzie on March 10, 2013 at 8:10am

I had a check-up with my neurosurgeon on Wednesday a year after I had Gamma Knife treatment. I see Mr Neil Kitchen at The National Hospital for Neurology and Neurosurgery in London.

I was shown the scans pre and post treatment and then told that there had been no change at all in the size of the AVM.

I have to go for another MRI late this year which will hopefully start to show signs of shrinkage.

Have been feeling very low since the appointment. I was really hoping to hear that there had been an improvement.

Comment by Melanie Chawner on March 9, 2013 at 6:45pm

Thanks Caro and Pink and everyone else who have wished me well for the op the comments are lovely and supporting, il up date you on my progress after friday some time depending how i am :)

Comment by caro Head on March 9, 2013 at 9:11am

Comment by caro Head on March 9, 2013 at 9:11am

Hi Melanie,
I am glad that you have managed to get all the info you needed and that you finally have a date. I wish you all the best for your surgery and wishing you a speedy recover afterwards. You have been waiting a long time for this and will soon be able to focus with moving on with your life. I waited 9 years since forts having symptoms to finally getting a diagnosis and surgery so know how frustrating it can be. I am genuinely sorry if I came across a tad defensive with my NHS comment, I guess I am a bit bias as I work for them!
All the best xx

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