so I worry. The other day someone told me that my AVM can grow back, and after all the pain I went through I sure hope not. Now that I am finally getting better I don't see my Dr every month so I won't see him until next month right when I start school. I'm a proud soph. in college! I worry though I hope I am not in the hospital again. Anyways back to my AVM possibly growing back. I read people's stories and they say it might, but I don't think with surgery. So I'm coming up with thousands of questions for my Dr to answer like when are you gonna take me off this medicine. I am on a really high dosage. Plus I'm on two seizure medicines since I kept having seizures after surgeries. I'm happy my hair line on my left side grew back! I think the middle is gonna take forever to grow back :( I miss my hair. What I miss the most is my left eye I hate wearing glasses all the time. When I don't, people look at me weird. My eye is opening but people don't see it, because I have long eye lashes, and it closed again with my second surgery in May. I see an eye Dr in August too can't wait. I hope I don't read anymore stories that scare me.. goodnight folks
The only way an AVM can re-grow as an adult…would be it here is any residual AVM remains. That is why a follow-up angiogram is so important.
This site scares the crap out of me too! But...I can't disengage from the few bonds I've made with people here. I get scared but every time this site scares me, I find myself more informed as well. I have heard that AVM's can grow back if there is any "pieces" left behind. I've heard this is more common when radiation is involved versus surgical resection. But sometimes AVMs are deeper than the surgeon might realize and thus there is no guarantee of it's entire removal; which is why, like Barbara says, a follow-up angiogram is very important (I say this knowing I've had no follow-up LOL) I realize yours was not cerebral though, right? It was near your eye, right? I have no idea what tests are done for that besides MRI's. But you seem to have a good crew of Doctors working with you. I'm sure if you keep your list of questions handy and ask them when the opportunities arise, you will find your fears resolved in no time.
As for being looked at weird, people will always find a reason to look at anybody like that, with or without the types of procedures you've had. It is hard to become accustomed to but you will eventually learn to accept it and live with it. Or you can go drastic, get an eye patch, draw an eye over it and give people a more valid reason to stare at you:)
Thanks Barb.. My Dr I think said an angiogram was unneccessary unless I have another seizure. I have had 3 since my AVM was removed. My Dr put me on more medicine, but nothing else. Honestly it worries me, because I am going back to school and I don't want to go through no problems. I just really hope I have no more seizures. I am gonna mention to him how I felt like I was gonna have one the other day... but the feeling went away.. Thank the lord
My AVM was in my temporal lobe it was in a seizure prone area, and it was 3 inches long where it was by my eye :(. My surgery was really long 27 hours and my Dr feels he took it all out. He said he check, but I don't know how to feel about that. I had my AVM all my life my Dr said it grew so maybe it could be deeper. I have taken a lot of MRI's I don't even remember how many anymore... Hey I got a eye patch too I hate wearing it though.. I thank you for the support Kristi
My surgery was supposed to be 8 hours....it turned out to take 13 hours (a number my life seems to revolve around) as my avm ran so deep they couldn't see it in the final pre-op MRI that took almost an hour to complete! Thank goodness I am not claustrophobic!
Hi Veronica. My best advice to you…get plenty of rest and avoid alcohol. @kirsti and Veronica…please do not be frightened by this site. I have seen soooo many members come on here at the beginning stages of diagnosis…then later write the word obliterated! This is a good thing!
Hi, Veronica, Winston Churchill once said, “When I look back on all these worries, I remember the story of the old man who said on his deathbed that he had had a lot of trouble in his life, most of which had never happened.” Stay positive, and try not to let the worries in. You have come so far already. I hope things just keep on getting better for you.
My surgery was only suppose to be 13hrs and it lasted 27hrs! I am not claustrophobic either c: thank god for us haha kristi. Barb I avoid alcohol havent taken a sip of it. I am hitting almost a year since I found out about my AVM and almost 4 months since i had surgery. Thanks Dancemom I appreciate the support :D