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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


i have/had one of the cavernous hemangiomas (antoher name for venous malformation,as well as cavernoma,angioma)inside my spinal cord.You are actually quite lucky(really) that you have this inside your brain as opposed to the other two most common areas for these to show up.the brain stem and spinal cord the other two are in most cases considered inoperable as they would cause more devistation to remove than to just leave them alone.i had to have mine removed as it was bleeding off and on and my NS decided that my next bleed,which he was pretty sure would come most likely within the next year,would most likely paralyze me from the chest on down.Mine was inside the cord at the C 7, t 1 area.the problem with having them inside the cord is there is no room for the blood to flow,so it stays in that spot and grows biger and bigger and causing pain and major neuro deficits.It was not an easy choice to make, believe me.My NS told me that because it was located behind two major nerves(the one to my fine motor in my hands and the one to my legs)i would definitely come out of the surgery with some significant neuro problems,but I really did not have much of a choice as to leave it in would have most definitely caused me major paralysis some time soon.

i would say that unless the cavernoma is causing you major problems, your NS would most likely not want to remove it.But if you do have to have it removed, of course it would be major surgery but depending on where it is located exactly, it could be done without causing you major problems.has yours bled at all or is it been behaving itself?if you had to have some sort of lesion in your brain(not that anyone would actually choose this)a cavernoma is what you would want to have, believe me.it is not invasive and constantly growing as in a cancer, it is not high pressure like the cousin of the cavernoma called arteriovenous malformation (which I am sure was mentioned to you as a possibility at one time or another)this is also what they thought at first was what I had in my cord, but after an angiogram ,it did not light up with the dye so they knew it was not arterial)a cavernoma stays pretty much self contained and even when it bleeds, it is just kind of a oozy type bleed,nothing heavy or major in any way.i know you don't feel espescially"lucky' right now but you really are.It could be many times worse in many really nasty ways.most NS's will usually want to just observe them and monitor them and really offer no treatment,as there really isn't any.If anyone at any time tells you that you need surgery, run to another NS for a second opinon.you need to make sure that this is your only option before you let anyone actually cut into your brain.if I can be of further help to you please don't hesitate to ask, K?good luck,Marcia





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