hey everyone,
I just got back from a business trip in orlando fl , now im back and i feel stuck.
Before i left last week i had three very important docs appointment including a second opinion.
One doc wants me to have embo and then removal of avm. The second one suggest i have 2 embo's and Gk.
Me i dont want to go through this at all but im at risk with whatever i decided. If i do nothing risk is there if i choose one of theses treatments im at risk.
Where do I go from here?
Hello-I was reading over your profile & didn’t read anything if you had any problems with your AVM? How did you find out about it? I found out about mine about five years ago from a car accident & they said it has never bled. My neurologist had told me that since it hasn’t caused any problems that we should leave it alone for now & just monitor it. He also gave me some pointers as to not take long flights, go scuba diving, go on roller coasters etc. My thoughts are with you on what you’re going through! I do have to say living with an AVM is stressful and pretty much not a day goes by that I don’t think about it. Good luck!
Hey,
Sorry for the late reply. I found out about my AVM in feb 14th of this yr by accident...i've always had bad headaches and my doctor sent me for a mri to see if there was anything to be worried about. That same day i find out I have an avm. The only issues i have now are the migraines and some blurred vision. I have the constant fear/worried that I will have a seizure and or a bleed when im home alone. I've had a second opinion and both agree that I should take care of this now rather then something happening such as a bleed and things being so much worse. I also want children in the future and the recommend that I should wait until this is taken care of bc of it being a high risk pregnancy and all i wouldnt want to put my baby at risk. So here i am almost 27yrs old and need to make a choice...for right now im going to wait till the begining of next yr to have my embolozation and sx....I have to get my time off of work in order..figure out a way to pay my rent and bills during recovery..it so much u have to do before doing something big like this but i know this needs to be done and im praying that nothing happens to me before then.
Thanks for the reply! I am also going to wait until the beginning of the year to get the ball rolling. Have you looked into Cyber Knife? I have been reading up on that pretty much all morning and hope to discuss it with my neurologist and see if it’s an option. I heard that there’s little pain/side affects & takes only about an hour or so to do. I know what you mean about finances, insurance & getting time off from work! I’ve been saving my sick time as much as I can & vacation time so when I start this whole process of opening this can of worms it will be a little easier. My sister said once I figure out what I’m going to do that she will try to put a fundraiser together to help with medical bills, as my insurance isn’t the best. Maybe you should talk with family & friends and see if they can put a benefit or something like this together too for you to help out? I wish you the best of luck & please keep me posted!
Hey,
Most of my family dont know about my avm and some friends know but not all. I really didn't want everyone to know until i decide what to do.
The docs say my avm is too large for ck and there arent too fond of radation bc of the long term affects.
They would only recommed it if my avm was at a place where they would be comfortable going into. To wait 2-3yrs to see if it worked is too long for me to worry.....
My mind is everywhere..i feel so stressed and confused..i feel like im at a sucky place in my life. ugh but thankyou for ur support..ur awesome..and please keep me updated as well.