About 2 months ago Dr. Spetzler found a AVM in my brain, I dont know the specifics because I was on soo much morphine because I was trying to leave so they had to put me down lol…Dr. Spetzler said to my mom that “Were not going to do anything now, better to leave it alone…He has to check in in a year and we will monitor it” I am 26 years old and never had a bleed, and had one seizure but Dr. Spetzler said he didnt know if it was because of my AVM…I hadnt had breakfast or lunch and was smoking cigs, so that could of caused it too…So how does this sound? Is this something that is going to end my life shortly? Will I see 50?
Also I quit cigs because I heard they are horrible for AVM, this is true right?
Thank you in advance for the help, please be honest and blunt.
You are better off without the cigs. There are definitely lots of people who’s AVMs are untreatable and they go on to live long lives. Statistically, many (don’t know the number) people who have an AVM will never know it in their lifetime. The only reason people find out is because of a bleed or because of a seizure or random MRI from something else.
It’s not a death sentence by any means. Preferably, you’d want it removed, but if your neurosurgeon says to wait, there must be a good reason. Dr. Spetzler is one of the very best. You’ll do well to go by his recommendation.
Spetzler told my mom that the risk of surgery is greater then leaving it alone, since I have never had any symptoms…Thats a good thing for him to say right?
So if I just take care of myself I will live a normal life right?
Also if I have a bleed it is something that is pretty obvious right? Id feel something from it?
If you have a bleed, you’ll (normally) feel nausea, headaches, vomiting - you’ll know. I don’t know the details. Perhaps the AVM is too small to worry about. This is a question you’ll want to ask your neurosurgeon on a follow-up.
Farshad said:
Spetzler told my mom that the risk of surgery is greater then leaving it alone, since I have never had any symptoms…Thats a good thing for him to say right?
So if I just take care of myself I will live a normal life right?
Also if I have a bleed it is something that is pretty obvious right? Id feel something from it?
Farshad, like Ben said you’ll probably know if you’re having a bleed. For me it was a horrible headache that quickly led to a loss of vision, vomiting, and disorientation. If you have these symptoms you’ll definitely want to get to a hospital quickly. Good luck to you.
You are right cigarettes are not good for people have avm’s or anyone for that matter. Good thing you quit. Just because you have an avm doesn’t mean that you wont see the age of 50. Just take care of your self and your body…if you notice any weird symptoms or have seizures make sure you tell your neurosurgeon. The best thing to do would be to have it removed, but sadly that can’t happen for everyone. My grandpa is in his late 60’s and back when I was born…4 days later. He had a really bad car wreck and was in a coma. That was when they decided to do a ct scan and they found it. He has never had a bleed or any other kind of symptoms that would even lead for someone to think he has an avm. In fact until I found out about mine in Novermber of 06 I didnt even know about it. This shows you that there are people out there that live long healthy lives with an avm.
Wait the year like your doctor suggests, and you never know with the advances in technology because there might be something they can do. good luck to you!!!
Thank you for all the replies, great to meet you all! I was also wondering, what is the approx size if they say my AVM is 1/6th the size of brain? This is a estimate…
I am also glad to hear that since I have not had any symptons etc, that it isnt a death sentence…Dr Spetzler even told my mom not to cry over it, its not that bad and they even have a nurse working there with one and since I havent had a bleed yet that my chances are good for nothing to happen and I know hes one of the best in the states.
Good thing you quit. Just because you have an avm doesn’t mean that you wont see the age of 50. Just take care of your self and your body…if you notice any weird symptoms or have seizures make sure you tell your neurosurgeon. The best thing to do would be to have it removed, but sadly that can’t happen for everyone. My grandpa is in his late 60’s and back when I was born…4 days later. He had a really bad car wreck and was in a coma. That was when they decided to do a ct scan and they found it. He has never had a bleed or any other kind of symptoms that would even lead for someone to think he has an avm. In fact until I found out about mine in Novermber of 06 I didnt even know about it. This shows you that there are people out there that live long healthy lives with an avm.