FROM my understanding about radio surgery… Total obliteration at the two year mark for avms (2cm or less) is at 80% to 90%. And 40-60 percent for larger ones. AND MINE IS “STABLE”!!! Has not changed in over 4 years!!! Did they f%#$ing miss it in treatment. Mine is around the 2cm size. DO i need a lawyer? Why is it taking the doctor two months to not get back to me form my last mri. I am so upset.
I am 34 and can never have kids because of this. I also walk around with a risk of it bleeding. The place I got it treated at is well known. Yet because of a job change, they don’t accept my insurance. I don’t buy that my condition is ok and the word stable is getting to me!! They never told me it shrunk. I have to pay to get a copy of all my mris and have another doctor read them. Do I have a case to bring to court?
What is the percent of people with avm’s 2cm that have zero affect after treatment? Read that (obliteration) after the two year mark is high for that size and lower for larger ones.
Yet in over 4 years my 2cm avm has had not even changed in size?
Someone please explain… thanks
Tina,
Just for better context, how many gamma knife treatments have you had / with what frequency?
I’m sorry to know that even after 4 years, it hasn’t had an impact. I completely understand your frustration.
Best wishes, Richard
Well I only had one treatment. Yet my avm was always 2cm and still is that size after four years. Thank you for responding to my post. I am so frustrated.
Hi Tina,
May I ask where you are from? And when were you diagnosed with AVM? My AVM/KTS starts at my knee and goes up to my hip. I’ve never been given a size diagnoses.
I know how frustrating it is. But finding the right doctor is the most important part or you’ll end up with dr’s experimenting with techniques they just read about. I know of many dr’s to go to in the NJ/NY AREA.
Try to hang in there.
Jay
My doctor said gamma is not an option for me because of the size. He said I could come back in 3 years and it may still be the same. Did you ask about other treatment options?
Well with my new insurance since my treatment, wont accept the doctor
anymore. I have no clue who to go to now. Or what the next step will be.
Mine was half embolized and the other half treated with radiation. It really hasn’t shrunk much after 7 years but the blood flow through it has stopped and that is the important thing. Sounds like you need a cerebral angiogram to get a better look at things. Good luck!