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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


wow,that was one huge angioma you had removed.the one in my cord was about 2x4x6 mms.but in the cord,that was pretty big,it also kept getting bigger because of the bleeds i had.i was told that if it bled again,which it most likely would considering i was what my NS called me,an active bleeder when it came to just the cavernoma itself,the third one would most likely paralyze me from just below the breasts on down.soo it was either wait and have that eventually happen or to have it removed under very strict monitoring circumstances.the big issue for me tho was the location of it in my cord.it was fairly close to the cord wall,which was a really good thing,but not in a "favorable' spot for resection due to the fact that the nerves that ran to the fine motor functions in my hands and the nerves that went to my legs,just happened to lie right between the cavernoma and the wall.so he would have to go thru those in order to get to it.great choices huh?i really real;ly did alot of research(thank god for my PC) and went around and around with this in my mind and spoke to alot of really important people in my life in order to try and come up with the best option.i decided to have it removed,mostly to rid me of the hidious pain it was causeing me right under my R shoulder blade that felt like someone was trying to pry off the blade with a crow bar or something.it was there 24/7 and driving me insane.unfortunetly no one told me that the surgery itself and the definite spinalcord damage to the spinal tracts in there could cause me even worse types of pain syndromes.they happened,and boy do they ever suck and are extremely hard to treat as theydon't respond to narcotics at all since they are neuropathic in nature.so it was off to the pain clinic where they have been helping me alot inmany ways,just to get the paindown to where i don't feel like jumpimg off the nearest bridge.it has been a pretty hellish road for me becaue of the freakin surgery and the extensive damage it caused to many areas.but i am manageing.

you know,believe it or not,having the cavernomas inside the brain is actually one of the best places(i mean if you are going to have to have one,the brain is the best place you want it,really)only because there is room for the bleeds and for growth.the absolute worst place,would be the pons area of the brain as it is way too dangerous to even attempt a resection there,most NSs wont even consider it.there are just too many very vital functions that could be damaged upon even cutting that area open.the second worst spot is in the spinalcord mostly because there is just no room there for the bleeds and constant expansion they cause.there is no give or flexability inside the spinal cord.the damage i suffered was mostly just due to the sugery itself.

i have never had a siezure from mine since it is in the spinal cord and not the brain.not all cavs inside the brain will actually cause siezures,some people have absolutely no symptoms at all and never even know they had one til it just happens to be found upon autopsy or by some sort of scan done there for another reason.thats how mine was actually discovered.i was having an MRI done on my c spine since i knew for sure that i had herniated a disc just by the symptoms i was having.sure enough,my doc calls me like the next day which kind of scared me ince they don't normally call that soon.he said yep,i had a herniated c 6-7 but they also found what they thoguht at that time to be an AVM? or arteriovenous malformation.the avm is kind of the counterpart to a cavernoma.while a cav is venous fed,the avm is arteriorly fed which makes a huge difference in the amount and the danger of the bleeds simply becaue arterior blood is always under high pressure while a cav is always low pressure,when a cav bleeds it is more oozy rather than the flush or spurts of the avms.it wasn;t til i had to have the angiogram done to see if it would light up on the screen that i found it was in reality only a cav.i thought we were going to be okay since i didn't actually have the avm,silly me.

the best thing to do is just to find out as much info as possible about what you are dealing with.thats what i did,and after the surgery i had alot more research to do just to try and figure out whay a;ll of this really ***arre and totally off the wall kinds of neuro wierdness was happening.once your spinal cord has been damaged,wow do things ever get just soooo out of the norm inside of your body.my sympathetic nervous system was also damaged so thats causing its own little hell in here.it also triggered a really excruciating condition called RSD? its plain ugly types of really horrid pain that doesn't respond well at all to the standard strong narcotics,except for this really nasty deep bone ache,but the constant burning inside my knee is really the worst.i am also taking anti siezure meds,but its just strictly for my neuro pain.it works on the nerves very similar to how it works to prevent siezures?by calming down the out of control nerve signals that in you,will trigger siezures,but in me,it triggers pain.kind of freaky,huh?

you know,if the triletal isn't working well or giving you too many intolerable side effects,geez,there are tons of different types of ani S meds availiable for you to try.they all are just a biot different and also vary ALOT in the types of side effects.i have tried about four and now as of thursday i am trying a different one again.but you can discuss this with your doc about at least trying others til you can find one that works for you without the side effects.these types of meds all will have their own little ways of working and some are just more compatable to your particular body and brain than others.it really IS worth it to look at other options.some of these that i have tried have been just totally overpowering as far as horrid side effects and some have been much much better,you just need to work with your doc and try different ones til you find a more tolerable one that works best for you.they are not all created equal,trust me.your neuo knows about the different ones,see what he says.

when trying to find info on these cavernomas?there are many different names you can use,some will give you different info just by looking up info using one of the different names.try using cavernoma,cavernome,angioma.hemangioma,cavernous hemangioma,or even vascular malformations.trust me,i have looked up a ton of info by using these different words for the same exact thing.also using combos like cavernomas brain,and stuff like that will help alot.but the biggest thing is just obtaining the info you need so you can really understand what it is you have and will also be able to make much more better informed decisions when it should come time to possibly have to do something,or an interventional procedure of some sort.

i wish i could give you more info on your particular type of cavernoma being in the brain.but the cord and the brain are two seperate and very different areas that have their own special little quirks and ways of presenting themselves.I DO however have another vascular malformation in my brain tho that was discovered about this time last year.i was "gifted' with a wonderful brand spankin new aneurysm which my NS is pretty sure is related to my polycystic kidney disease.that particular type of kidney disease just makes sufferers be born with just naturally weaker blood vessels.he also thinks that is why my cavernoma developed in the first place.but this is just me and my particular reason for them.no one really knows for sure just what actually causes cavernomas and avms.they are just there somehow in certain people.some even will run in familiys.just plain wierd.

i do hope i helped some.if you have any other questions that i may be able to answer for you,just hollar,K?good luck with the remaining cav,i hope it will just sit there and behave itself for you.but DO check into a possibly different anti S med.like i said,there are many different ones that may not cause the extreme side effects of the trileptal you are currently on.but the biggie here?inform yourself as much as possible and then priint off all the info to keep in a file so you have it all there inone spot to referance from if the need arises.thats what i did,along with obtaining all copies of all MRI reports and any other testing stuff and also all op notes from surgeries and the hospital records to go with them and all clinic notes and plain old medical records from every treating doc i have ever had.it really IS important that you have your own copies of all your medical records.if you should ever have to go to the ER or something,keeping all of your most recent records,espescially the MRI reports and other important stuff in a file folder really makes the trip much easier and gives the treating docs something to work from,ya know what i mean?it also saves a heck of alot of time,which in your case,could be crucial in the event of a more dramatic type bleed.its just a bit of security that you can take care of for yourself.my folder goes everywhere to all appts and any possible er visits. just a suggestion.take care Dawn,marcia





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