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Comment by Susanne on February 7, 2013 at 4:58pm

Hello
  I do not know "what to do with myself"
  As I have written they just have removed my Av - malformation and 4 anurismer ...
  I am very grateful. Unimaginable that my vision of right eye is destroyed and my nerves in my head is non-existent.
  Since my surgery, I "fled in practical work" my bedroom was painted my kitchen as well.
  And it is still only 4 weeks since my surgery.
  My fiance has been admitted to a psychiatric ward due to stress (my illness) she has been too much "on" to help me.
  What do I do about my feelings? My fear of death (still) my unfortunately a little angry that my fiance is hospitalized for stress. I know that it's not ok that I feel this way towards her.
  Of course it's ok that she is hospitalized. She should of course have the help she needs.
  But what do I do with myself?
  Every time I see myself in the mirror I see a greatscar
i see myself without my hair!
And think, what the hell happened! Who has removed my hair? What happened here???
  Apologize that I write!
  But do not know how else to contact me with my powerlessness

Comment by Susanne on January 19, 2013 at 11:23am

Hii
So I'm home for a well done crainiotomy.
av-malformationen and 4 anurismer is gone.
Jeez. I'm now here in my little house, with my lovely cats.
My vision in my right eye is destroyed, my nerves in my head, is non-existent, but I am deeply grateful and happy!
The doctor thinks that my epilerpsi will disappear quietly. I thank Aarhus University Hospital .... Surgeon: Tom Segested, my family, fiance and my friends to be there (still) for me, despite my impotence anger and deep sorrow

Comment by Svetlana on December 16, 2012 at 7:38am

Hi everyone!
Is there anybody here having treatment in Germany? I need information about Vascular Centers in there, especially about Marburg team (angiome.de). Thank you all!

Comment by Susanne on December 14, 2012 at 7:31pm

must have craniotomy, but have not be offered inbolysering first because I have some veins that are very extended up to my AVM. Anybody know if it have some importance

Comment by Susanne on December 12, 2012 at 5:38pm

Anyone have experience with this operation?I am nervous, so I will be happy if there is someone who might write here,or send me an email.

Comment by Susanne on December 12, 2012 at 2:35pm

Hi my name i Susanne im 45 years old and from Denmark. I Was diagnosed with an AVM in my Brain ( april 2012 ) and going to have a craniotomy in jan 2013 ....

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!

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