Hi, M. Anderson and Shezza:
My heart goes out to you. I will tell you of my own experience.
I had an AVM--a spinal dural fistula--diagnosed in 2007 at the T6 level. I had been experiencing symptoms for years, and it required three MRIs to discover the AVM. After conferencing with my neurologist and radiologist, we agreed to try to embolize the AVM. This procedure required 7 hours and was only partly successful. The next day, I could walk and most of my symptoms had abated. Unfortunately, the Beast grew back, and the symptoms returned, and three months later I suddenly lost the ability to withstand gravity, and could not get to my feet or remain erect.
From my reading--admittedly limited--it is now procedure to go directly to surgery in situations such as mine, rather than first attempting embolization. But I do not rethink my decision. It was a gamble to cure the AVM without surgery, and I do not regret making the effort. Karma.
The surgeon cut out the AVM the day after I lost the ability to stand upright. But by then it was too late for me.
The good news is that I regained most major bodily functions, which is a miracle. Apparently, few AVM victims regain the ability to walk once they have lost it. I, however, can stand upright and walk. Although I have bladder and bowel issues, as M. Andersson mentioned, I am not incontinent. Another miracle. Nor, thank God, have I experienced sexual dysfunction. It seems that the venus hypertension missed these nerves.
Unfortunately, unlike M. Andersson, I have experienced constant pain every waking second since 2008. The pain varies between 2 and 6 on a scale of 10, and runs from my waist to my toes--burning, tingling, numbness, aches, hot and cold -- you name it. My nerves have been damaged; after six years, it is unlikely that they will repair themselves any further.
I wish, Shezza, that I had good advice for you but I do not. I can only share my story. Every AVM is the same and every AVM is different. Despite my pain I consider myself lucky. I pray your husband will find a solution that works for him.