Hi I have a cervical spine AVM with 3 anaueysms. Have been told that because it’s both in and on my spinal cord that they will do nothing. How do people cope with the terrifying aneurysm word ??
Manda
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I don’t know, I guess recognize that every day is a gift, and always know it could be worse. I will pray for you.Hugs.
-Lorna
Amanda,
I’ve not had as much going on as you and I think my optimism was spurred greatly by my view that (in my case) my AVM was eminently “fixable”.
However, when I was going through the 2-3 months of not knowing how big it was, how much risk I had, my view was one of “I’ve made it to 50 without really worrying about my health. That’s pretty good”. I have a relative with a condition which means she will probably not make it to 40, and worse, she’s known about it all through her childhood. We’ve made it a long way without that.
Do you feel ill as a result of your AVM / aneurysms? I hope it is easier to ignore and get on with life the best we can if it doesn’t make you feel poorly. My AVM made me dizzy and I could hear it, and those things did curtail what I did, what I wanted to do. I’m now embolised, I half believe I’m fixed 'cos I’m still a bit dizzy, but I think whether I was fixed or not, I would take the view that you can’t go round waiting for the thing to pop. That’s not the way to live. If it’s determined to get you, it will. However, you might spend the next 20 years worrying about it and it never bite. If we spend the next 20 years suppressing life (I agree we need to live within sensible bounds) we might as well have had the thing pop at the start.
I mean this supportively. I’m not sure it is coming across right.
If it helps, read Ecclesiastes 9:7 to 9:12.
We don’t know what will happen. I reckon if I spend all my time worrying about this, I’ll not see the bus heading towards me.
Hope this helps. Very best wishes,
Richard
My AVM was located in the spinal cord. No neurosurgeon would go there. It was treated with the third and final option (after the first 2 were ruled out). Gamma knife had kept me going. Hang in there. It’ll work out.
Hi Lorna, Richard and Jim.
My apologies for the delayed reply.
I really appreciate your reply and Hugs of course Lorna 
Unfortunately Jim my neurosurgeon will not touch it either and the Consultant Radiologist ? Has said he would not do nothing either as way to risky. He did not rule out the possibilities in the future as medical progress may allow treatment but the complexity of my AVM has not had much positive outcomes. I do try to keep positive but sometimes the scary thinking creeps in.
I can see the positive support Richard, thank you. My symptoms are similar to yours and seem to go from the top of my head to my toes ! Lol . Balance, dizzy, headache, fatigue, memory, pins n needles, heavy legs weird sensations to name but a few😲 . My medication helps me sleep better which has been important. Currently waiting for a move within my work to a less risky environment, so reducing risk where I can.
Amanda
Well, you know we are here to offer love when you need it, an ear to listen or at least an eye to read.
As you say, medicine advances all the time. I’m convinced my grandfather had a brain AVM and lived his life undiagnosed, never mind any treatment. Yet I’ve had neurovascular surgery through a tiny catheter. Fantastic.
Very best wishes,
Richard
Thanks Richard 