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If I understand correctly, posibly 1-2% of CCSVI cases lead to "thrombosis" - in which case it can sometimes be treated successfully and in other cases the vein dies.

I have been trying to understand (to know the risks) what would happen if the vein dies? For example, would a person need an amputation or have paralysis in that area or have permanent pain in that area?

Also if a thrombosis did happen after CCSVI would it happen fairly immediately (within hours or days) or could it be weeks or months later. I am asking because I don't live near a big hospital and if it is something that happens within a few days I would prefer to stay near a big hospital for those few days.

Thank you for any information. I know it is a small percentage who experience this. I just would like to understand it a little better, especially, what are the ramifications/consequences of a thrombosis.

Thank you.

I meant to say thrombois in cases of CCSVI treatment above. I left out the word treatment. Thanks.

One thing that strikes me is that we don't know what the percentage is. 1-2% would be a guess. Maybe it's 0.5%, maybe it's 10%? This is a drawback to gathering information from our collective experiences, because we hear of risks and don't know how big the risk is. My opinion too is that it's small and that there are ways to make it smaller, but that is opinion. (Minimize trauma to the vein wall (because trauma can lead to thrombosis) and prescribe anticoagulants after the procedure.)

If the vein dies, other veins will have to take its share of the blood flow, so it depends on the health of the other veins.

I am glad you asked this in the forum, I hope others will chime in.

carollevin wrote:If I understand correctly, posibly 1-2% of CCSVI cases lead to "thrombosis" - in which case it can sometimes be treated successfully and in other cases the vein dies.

I have been trying to understand (to know the risks) what would happen if the vein dies? For example, would a person need an amputation or have paralysis in that area or have permanent pain in that area?

The vein clots, forms scar or creates a new channel and blood flow through it. The vein can shrivel up.

thrombosis of the vein would likely have no immediate consequence but could result in swelling above the clot, pressure in the tissue, etc. in situations like this with many collaterals, the effects would not usually be so drastic as needing ambutation, but could.

Also if a thrombosis did happen after CCSVI would it happen fairly immediately (within hours or days) or could it be weeks or months later. I am asking because I don't live near a big hospital and if it is something that happens within a few days I would prefer to stay near a big hospital for those few days.

most of the thromboses are found long after patients have left the area where they were treated. I have heard of some occuring immediately, iMy first patient was admitted for the procedure. she clotted on the table. turns out that was a hypoplasia and i could not save it despite two days of intensive treatment. My patient never had any symptoms of the clotting.

Thank you for any information. I know it is a small percentage who experience this. I just would like to understand it a little better, especially, what are the ramifications/consequences of a thrombosis.

Thank you.