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Comment by brid browne on October 18, 2011 at 6:14am

Please help and vote! I work for this organization that provides therapy to children with physical disabilities. If a child in my local area had an avm and required physio, speech or occupational therapy they would be referred to us. I always wonder how I ended up work here! We are in a local fundraising even which is worth up to 20,000 for the service so please click on the link below and vote for Enable Ireland. We are 140 votes behind the leaders and you can vote from any were in the work so pass it on.
Thanks,

www.facebook.com/ManorWestRetailPark

Comment by Ab on September 29, 2011 at 3:43am

Sarah, I don't know about support organisations but you may want to get yourself referred to INN at queens square in London. They are the best regarded in uk for treatment.

Also yu may want to talk to dr. Houdart at hospital lariboisiere in Paris. He does embolisation and is world class.

In my case my son has a spinal avm which they were reluctant to treat due to it's diffused nature and it's intra and peri medullary component and the risks involved. However dr. Houdart in Paris has a slight different technique of embolisation which is much lower risk and also the probability of being able to do a treatment is higher. We went to him and the avm has gone for now. Also the costs are very astonishingly low.

Comment by Sarah Davies on September 28, 2011 at 1:43pm

hey guys :)

I live in Wales and was diagnosed with an AVM deep inside the right lobe in November 2010 after 18 months of "investigations" by what I can only describe as the most noncompetitive team of doctors and "specialist". The only team I cam across the appeared to have any knowledge about my condition were the radiotherapy team at Sheffield where I finally received Gamma Knife Surgery in July. After reading up on my condition when I was first diagnosed, all American posts, I was expecting a lot more. I don't know about the rest of Europe, but I know that there is a serious lack of knowledge and understanding regarding AVM's in the U.K> Does anyone know of any organisation fighting for this condition to be more recognised in order to gain faster diagnoses and faster treatments? I am struggling to find anything in the U.K and I am still having to explain what I have to A&E doctors, Neurologists and even Neurosurgeons. If anyone knows of any such organisation please let me know :):) i'd love to help in the fight to get our condition more recognition. Gl everyone <3

Comment by Pandylou on September 12, 2011 at 11:03am

Hi everyone!
I live in Sweden and was diagnosed with AVM in my jaw and lower lip in 2001, and have had two embo's since then (2005 & 2009). My last operation made the AVM barely noticeable anymore which is a relief, but I still have trouble with pain and now it's started growing into my left cheek, so I'm supposed to get a third operation very soon. If there's anyone else out there with visual or facial AVMs, I'd be happy to share experiences. Thanks, and keep on fighting!

Comment by Ab on September 12, 2011 at 2:07am

Sean, many thanks.

Comment by Seán on September 11, 2011 at 1:10pm

Hi Ab,
My avm is located on my right-side. its about the size of a golf-ball. I had the CK treatment on April 6th and suffered the bleed on May 20th. I was really well looked after at the London Clinic. My doctor is Danny Rawluk who is based in Dublin. It is difficult to know if the CK brought on the bleed. The bleed happened while on a week holiday - maybe I overdid it as I was feeling pretty good at the time and in hindsight I should have been taking it much easier.

Following the bleed I opted for no new treatment. I have a scan next month - 6 months after the initial CK treatment - that should indicate if the avm is reducing.

I hope your son is doing well.

Comment by jenc on September 11, 2011 at 6:31am

Thanks for the recommendations Ab :)

Comment by Ab on September 11, 2011 at 2:26am

Sean, glad to hear yu ar recovering well. My son has spinal arm but everyone was steering us away from CK other than stanford. I therefore have some questions for you

1> where is your avm located
2> did yu have a bleed after the treatment. from what stanford who have pioneered the treatment for spinal avm told me they have had no incidence of bleed in their 43 cases they have treated.
3. how was you experience with london clinic.
4. who is the doctor there to treat you.

BTW we decided to go for empbolization. My son just had it with dr. houdart at lariboisiere hospital in paris. he is very good and we would highly recommend him.

Comment by Seán on September 10, 2011 at 7:35am

Hello Everyone, I was diagnosed with an AVM in June 2010. I had CK radio surgery in April 2011. I suffered a bleed in May. I have recovered well from the heamorrage. I would be pleased to learn from the group here and contribute where I can.

Comment by Ab on September 9, 2011 at 3:39pm

I would recommend dr houdart at hospital lariboisiere in Paris. He just treated my son who had spinal avm. His treatment is by far the lowest risk treatment of all. He is the best there is along with dr berenstein at Beth israel in ny

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