Me being the obsessive worrier that I am, I have been thinking about my future with my avm. Now I was only diagnosed with it in january and had gamma in march but I have a history of being in the small percent of people that bad things happen to (i have slipped capital femoral epiphysises on both hips, 1, rare cuz it is 2, because most people who get it are african american and male, i am caucasion and a female… and i am also alergic to the steril stiches they used my surgery, part of 1%, and now the avm…anyone know a percentage??)
anyway, i worry a lot and I am worried because things i have read online have said that gamma is most effective for small avms (less than 3cm), mine is 3.5 x 3
When I had my 3month post op mri there was no change but none was expected, i go for another mri and visit in march for the one yr post op and i donk know what to expect…
But me thinking negatively if my avm doesnt shrink totally or doesnt shrink enough after 2 or 3 years do you think they would gamma it again or do and embo and gamma (has anyone heard of this happening). open surgery is not an option because of the location
and sorry for the, uh, jumping around, im kindof scatterbrained at the moment
I don’t know about embolization and gamma but my doctors are thinking about doing an embolization on my avm and then cyberknife. (My avm is about 3cm and also can’t be operated on because of location). My doctors are waiting for word from Duke so the plan may change. Also I was looking on line and the college of neurosurgeons were saying they don’t rocommend embolization in combo with radiosurgery-that it usually doesn’t work. Anyone know anything about that? I am going to asl my doctor too. (sorry I didn’t really answer anything, did I?)
lol not rly but its good to know someone else was thinking abnout that
but isnt gamma kinda the same thing as cyber?? ive looked online and i cant really find anything on cyber, just that you dont have a head frame…
do you rememerb what website it was? cuz did it actually not work or did it just not help?
I am going to ask too, but i dont see him until march, unless something happens before then…
I’m not sure the name of the site- I think I googled cyberknife and embolization. I know the heading of the site was something like “college of neurosurgeons” and it was kind of technical. I believe it basically it said that often the avm would not be obliterated using these procedures in combo…especially if it is a larger avm. I’m going to ask my doctor about it too.
They were going to do embo on my daughter Ashley because her’s is also inoperable due to location, but when they were in there to do the embo it was determined that if they proceeded there would be permanent paralysis and possible speech/language issues, so she was only treated w/4fractions of cyber-knife…we saw some success already at her 3mo. post op mri. Not much help, but they did say that if the cyber-knife didn’t get it completely they may be able to retry embo, or do more rounds of cyberknife. Best wishes! Denise
ive kinda wondered about something…ive heard of other people who were supposed to have an embo and they couldnt cuz it was too dangerous, but if they attempt to do it again wouldnt it still be too dangerous? what would change?
i am def going to look that up, cuz i still think about that…
when do u see ur doc?
Jessica, my doctor told me as well that I’ll be having one or two embo’s followed by irradiation. MY AVM is 3½ cm as well and that’s too big to do just the gamma thing, so they want to shrink it first and then get rid of the rest from the ouside.
Being scatterbrained doesn’t sound so weird to anyone here, I should think :>