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AVM Survivors Network

Spinal AVM T9

Hi my name is Ed. I’m in the UK my avm is in my spine it has took years to diagnose I had an accident hit a car wing mirror thing went wrong over 7 years eventualy I had an angiogram at that time I was not sure what the procedure was for I thought it was exploratory but the surgeon was trying to fix it , mine is at T9 right at a branch imagine a tree with a branch mine is were the trunk and branch meet and it is not possible to stent or glue because it is to close to the spinal cord I have unoxygenated blood trapped within my spinal colume which causes paralazies in my legs and my bowel and bladder have slowed down and prior extreme nerve pain I thought I was going to end up in a wheelchair. I have noticed that what I eat has a massive effect on my neurology I listen to Dr Axe, Mary O’connel , Dr Mendez the Ted talks on treatments on youtube they are alternative medicine Doctors took me years to realize that what I eat is important it can cause more pain or reduce pain some of it is not nice so I mixe it with something I do like your body really is a remarkable all’s it needs is a little help on youtube there are people willing to tell you how to do this for free I take diatoms (diatomaceous earth) found out through YouTube cos when I was looking at my MRA scan the neurologist was explaining that I needed surgery to fix it, but I noticed a narrowing of arteries as well after years of trying diatoms it’s a powder it’s food grade and it’s taste less ,my eyes have I’m proved as I were glasses, now it follows that my eyes are part of my periferal nervous system if my eyes have improved which has been shown through an eye test then something is working I’ve end up with a lot of vitamin in take I even give diatoms to my cats as it kills fles ,worms , ticks is good for there fur coats and skin in the years ive been givinging it them all these things are true for humans is also going for skin and hair I take what I call concoctions and am open to new ideas you pick thing up on the way and discovery is just round the corner

Hey Ed, your the first person I’ve heard of with an AVM in the same place as me!
I have chosen not to have surgery as my avm is inside the spinal cord and in my mind too risky. Pain wise I’m generally pretty good although I have dulled sensations in both my legs and get some nerve pain at times after I had a burst 4 years ago.
That’s really interesting about how diet has affected your pain levels - I’m really curious about what types of foods cause you more pain or less pain. Could you expand on what types of food affect your pain?

Lauren

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