I have had 2 embolizations and 2 LINAC radiation treatments(staged). Radiation treatments where 6 months apart. My AVM is in the left frontal lobe. When discovered it was 5.6 cm and eventually classified as grade III. My neurosurgeon didn’t feel it would be safe to risk surgery for fear of doing more harm than good. Therefore we went with radiation treatment. My question is, has anyone had an AVM that size go away with radiation therapy without having anymore treatment. If so how long? Did you have another round of radiation? I have read in many places that radiation is only good for small AVMs. Has anyone had radiation to shrink the AVM enough for their doctor to feel it would then be safe to do surgery to remove it? I really need to hear other peoples experiences. I am going to ask my doctors at my next appointment but that won’t be until next year. They see me every six months now. But I can’t seem to find any encouraging stories in this area. I have asked in the general forum but only one person responded. Please respond even if you had treatment in a different way so I will know if people are reading my question.
I also have a class 3 grade B AVM. Like you, I had stereotactic radiosurgery because the doctors felt the risk of damage was too great. I just finished a blog (in June) titled “Second Opinion - Stunned and Amazed!!”. Please read it for all the details, but you may have other options. I wish you the best!
I don’t know what grade mine is but it’s 4cm, deep in my right temporal lobe and it has both superficial and deep draining veins so my consultant felt that surgery would be too risky. They felt that it would be too risky to treat my AVM with embolisation as the vasculature is too complex and the glue could go to a normal vessel and cause a stroke, so I was told radiation was my best option. However, before we could set a date for radiation I was called back in on an emergency basis as they noticed from my scans that part of my AVM had grown and was at risk of rupturing within the next few weeks, so they tried embolisation to reduce the blood flow to that area. My AVM actually responded better than anybody expected and they managed to embolise 30% of it! That was on the 12th of June - I’m going to have an MRI in September to see if it’s improved anymore, then I might have just radiation, or just embolisation, or a combination. Keep your head up and have faith - every AVM is different and it might end up surprising you and your team. I was expecting to have to wait several years for the radiation to work on mine due to the size, but now my AVM has a chance of being obliterated sooner if they go down the embolization route! I will be thinking of you Melissa, I hope things go well