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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

DO NOT i repeat,do not,get this radiated unless this is some brand new technique that just came out that no one else knows about,this is not in any way shape or form an actual tumor and will NOT respond to radiation in the way that tumors will be subjecting yourself to very needless levels of high radiation that is totally unnesscessary.

did anyone actually explain to you just what a cavernoma actually is?that it is basically a glob of blood vessels that just happened to form ,probably before birth.i have/had(still have part)of a cavernous hemangioma inside of my spinal cord.and at no time was radiation ever ever mentioned as far as treatment,i went thru the head of neurosurgery at the university of minnesota.

have you done any actual research on the treatment of angiomas at all as far as treatment options?you will not find,to my knowledge,in any of the medical journals or articles that I went thru,any mention of actually radiating cavernomas,ever.i do believe this would not actually work given the fact that these are just veinous blood with AVMs,which are the counterpart of cavernomas,and are arterially fed.i do believe I had read something about the possible use for radiation in them,but not too sure why the differences there.

did they say that your cav actually had bled at all?this could have triggered that episode you had as they will usually not present themselves in such a dramatic way the way yours did.they will normally just kind of be there til either they have a bit of an oozy type bleed that may trigger the type of response that you had,or they go totally unnoticed except for feeling some little odd sensations or having headaches or something along those lines.but most of these are usually picked up when a person is having an MRI for some totally unrelated situation in the same area and they are just "there" on the films.this is actually how mine was discovered inside my cord,when i was having an MRI to check out which disc i had herniated.there it was just a glowin inside my c spine right below where the herniated c 6-7 was.didn't have a clue it was even there til then and I was just turning 40 that year.

mine ended up needing to come out only becaue of repeated bleeds.if this had been insiode my brain,my neurosurgeon told me he would have probably left it alone but being inside the cord,there was just no 'give" or room for expansion and the next bleed would have closed off the remaining one third of my cordspace and paralyzed me.actually,having them in your brain,depending on whether its in the pons or not,is actually safer than having them inside the cord.just where IS your located in the brain?

you really DO need to get all reports and all medical records that will be generated by you just having this inside your brain.the radiology reports are espescailly needed mostly so you can read thru them but alos just having your own set of all records to keep inside a little expanding folder that you can take with you to all appts and if you espescailly have to take a trip to the ER.all you need to do is grab that folder and go and you will have all of your very important medical info right there for all the docs to see.this comes in REALLY handy at different times,trust me on that.

did they tell you to stay away from all blood thinning products like Rxed type ones and any aspirin or even things like aleeve and advil?

you really DO need to be treated by a knowledgeable neurosurgeon and no one else.and make darn sure about the 'knowledgable" part.rather amazingly there ias alot of neurosurgeons and espescially neuologists who really do not know almost anything about how to actually treat these.i am kind of concerned that they are telling you about radiating this i said,unless this is some brand new thing that they just found out is somehow actually supposed to work now when it was never actually an option before now,well I would be a bit concerned about that alone as far as the actual overall knowledge your current treating doc.this is why you need to really start looking for all the info you possibly can on this and print it off and keep this in that folder.this will back up any questions you may have of a certain doc if he/she should be clueless about these and actually will argue with you(trust me,it happens way more than you would think when it comes to these)as far as the real info.

knowledge IS power and the more you actually know about your own conditrions the better treatment you will get only because you actually KNOW what is best based on the research you have know?I wish you lots of luck with your cav.just make darn sure to actually find that knowledgeable doc and thoroughly explore ALL options before consenting to anyone doing anything to your brain or the cav inside it.if you ahve any other questions,just holler.marcia

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