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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


believe me,i KNOW just how freaked out you are. not only did i have what you have in your brain inside my spinal cord,but i also had a brain aneurysm that was thankfully found early and was coilable.

that cavernous hemangioma you have is actually a glob of venous fed blood vessels,very LOW pressure type of lesion vs anything that would have been arterial would be very high pressure and much more dangerous and risky for any type of bleed(arterial bleeds are always worse than veinous ones). the thing about that hemosiderin staining? that means that you have had a tiny ooze from this that left behind what is called hemosiderin. its another word for like a "rust ring" iron deposit?

believe me,i did not have a freaking clue either til i went for my 3rd opinion on mine that i even had any bleeds there,despite having already seen two other NSs before that never told me what hemosiderin staining ment. i found that out the hard way too,when my neurosurgeon told me i had an "active bleeder". that ment that it had bled twice on me and he felt very strongly that another would be very highly likely and becasue of the size of my angioma and being in a very constricted space,that bleed #3 would have actually closed off my remaining cord space and paralyzed me from the chest down. this angioma was right at the lower C spine area inside my cord. sooo,i had to have it removed back in 2003.

having one inside your brain is actually much less risky for major problems ONLY becasue your brain would allow room for the bleed kind of thing? vs where i had mine,no give or "extra" space for it to go. honestly,the best thing you can do for yourself right now is research what you have. using the term "angioma" will get you alot of good results,trust me. in most cases, NSs usually will want to only monitor veinous vascular malformations like yours only because removing it could pose a higher risk of major issues. alot depends upon just where it is in your brain and what it may be creating for you as far as symptoms. just so you know,having this in the pons area of your brain is actually the worst possible place,so yours is definitely much better located there,trust me.

i am just wondering something here only becasue of the familial nature of some vascular malformations to even be created in certain families? do you know for certian if there is ANY family history of any types of kidney problems? my family has PKD(polycystic kidney disease)and for some insane reason,this particular kidney disease just makes me born with much weaker blood vessels. i was born with that cavermona inside my cord and chances are you too had that cav in your brain upon birth as well(it just had not shown symptoms til now). most are indeed congenital. just having PKD creates a much higher risk of vascular malformations occuring in PKD patients that is why i am asking about kidney problems. i did not know i even had this disease til age 40. my labs look great but huge cysts had been forming in my kidneys and liver my whole life. i also found out about my cav inside my cord when about the same age. just having an MRI for a herniated disc in my c spine revealed this inside my cord one day. very insane let me tell ya.

but do look up 'angioma" it will bring you the best results. please keep me posted on how things are going for you. if you have anymore questions i can possibly answer,let me know,K? marcia





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