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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

2 Likes

Hey Ed and Watson, I happen to have an AVM in my back too. I am not too sure what Spinal area exactly. I had similar experience too and currently still living with it. The leg numbness, weakness in leg, back aches and even bowel and bladder issues.

I choose not to go ahead with any procedures too and it has been 2-3 years ever since the discovery and all is going well. I am planning to do Yoga as a method of maintaining if not recovering myself.

Glad to know that food intake that you introduced might help with our condition too. I hope all is well for both of you. Continue strong and keep going on!

Hi Watson

Thanks for replying :grinning:

when you say similar do you mean you had an accident ? That’s how you got the fistula ?

I have had trouble with doctors my GP has not been helpful

I’m in the UK where are you ?

I think the yoga may help I’ve tried it and it is difficult you need a strong mind as well

I take a lot of vitamins I only eat rock salt on my food I only eat small portions of food

Yes my bowls and bladder have slowed down

I think I may ask the doctor for another mra scan because it has been 9 years in total and I only got diagnosed in 2017 2 years ago

You may find your feet start to swell so lift them up rest your legs on a table or something sleep in an inclined bed so your feet are raised up at an angle these thing help

Sincerely ED