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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

honestly bill,and i DO mean this most sincerly,if you do get that ins, please get thee to your doc and ask to have that MRI done from the brain on down to the sacral. seriously, one of the main reasons i responded to your very first post was i did very much feel that alot of your symptoms really sounded like spinal or the brain issue within that cerebellum where the alcohol actually hits when we drink? you just have so many different widely spaced symptoms that having something going on either in the brain itself or the spinal cord area could easily explain. you just need this one contrasted MRI in order to either rule certain things in or out,ya know? i really DO, as well as the other people who have posted to you over all these months most likely want, is for you to finally have some Dx of what is really going on in there.

having alot of anxiety at this point bill when you consider the length of time this has had to drag out because of your ins situation,well that is probably normal for anyone in your posistion. its finally getting any real answers here for you that will truely help with that and probably a level of depression that just comes along for the ride when anyone is in the same situation you are,ya know what i mean? i really DO hope that your possible ins omes thru for you,really. hang in there bill, marcia

dawn. considering just where your angioma is located AND combined with the bleeds you have had along the way, what you are actually feeling in your legs at this point,and alot of other symptoms as well, could VERY easily be from your cav. i had just really off the wall insane 'perceptions' of sensations that felt like they were actually happening but were not kind of thing? along with alot of pain gnawing pressure and prying underneath my right shoulder blade that nearly drove me insane 24/7 it was ALWAYS there. you also,like what i had have whats called an 'active cavernoma' or active bleeder. you do appear from what you have stated about things actually have probably had more than one real bleed in it(thus,that hemo staining in your report,still cannot believe the rad did not look for that source of the bleeds,duh?). luckily these are NOT arterial but veinous so they tend to just 'ooze' at bizzarre times with no prediction, they just decide to do it. every bleed can change things that we feel. depedning upon the very exact location of yours in that cord,that would dictate any real symptoms you may have. mine sat in whats called the spinothalmic tract which governs and carries all pain signals to and from the brain(i now, since my removal have 'deranged pain'),your ability to feel hot or cold and and a few other things. but there are like 20 some actual tracts that run like little bundles of cable thru the cord, to the brain. any tract that is or becomes affected(can also happen with just a simple bleed in some cases) would show itself in your symptoms. its just how this actually plays out.

i would take a good look at your MRI films but only at the slice pics where your cav is located? you will see it in subsequent pics as a black area within the normal looking cord tissue? you may have to actually look at alot of those slice pics to find the affected level,but you will know it when you see it? once you find those pics,just research spinal tracts til you hit upon one page that i also found that actually displays the tracts all laid out in that same slice pic pattern that the MRI shows, then compare the areas of black in your pics with what you see as a corresponding tract. this is actually how i Dxed my own tract damage, and i was dead on according to my NS when i showed him what i did. i actually have dmage to three seperate tracts. alot of what your true symptoms are is what you look for in that tract that governs it. it also lists what is governed there too. but between your MRI and the tracts pic and most importantly your ongoing or newer symptoms, will kind of give you a rough idea of just what areas of your cord are really involved here.

this is just something i did to try and understand what this cav was doing both pre op and post op too. one thing i wanted to ask about that leg? do you have "hyper reflexes' in it? if you take the end of a butter knife and tap the heavy end under that knee cap like you have already had done many times, see how "brisk' or quickened your reflexes are. if they seem much more quick, in most cases, this IS the result of your cord cav and not something else. espescially if you did NOT actually have this prior to the leg crap appearing. it could simply be the course or another bleed has taken place again. that would have to be defined with another MRI unfortuently.

just some stuff i felt you should know hon. marcia

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