I am getting quite concerned about my wife. As previously posted Faye was diagnosed in 1999 but since then has been offered no invasive therapies. In September last year she had a stroke due to a bleed from her AVM but again nothing was offered. My concern now is that as the one small bit of information we got was that the fistula is now really large what’s next? She is getting severe daily headaches and feeling sick a lot and my main concern is that at this rate she will have another bleed soon. What do we do? Hospitals and surgeons are now saying there is nothing they can do so what? Do I just wait for this to kill her?
I feel so helpless having to stand back and watch her going through this and there is nothing I can do.
Has anyone found anything that can reduce the size of the fistula without surgery and obviously without doing further damage?
I’m really at my wits end and me and the kids don’t want to lose our ‘boss’!
Sorry to hear that, have you tried Headway. I found them very useful and worth a try. Good luck, prayers for you all.
Mick…
Have you tried to get a second opinion at the Barrow Institute? I see recommendations on this site frequently for that particular one. I think a Dr Lawton has taken over for Dr Spetzler.
As far as I was informed Faye was receiving the best possible care in the UK already but it might be time to look further afield?
I wish you and your family the best of luck and it is sorry to say but with all of us coming together with our stories and support and educating ourselves, that were will be a time for our future AVM’rs to have the care and information that we do not have. I pray for all people, countiue to hold your head for as you are scared she is very much scared; women tend to carry it alittle better! hope all turns out better for you guys! keep us posted…