I have read some very good success stories and others with no results. I have a grade IV AVM right under my motor strip on the right front side of my head. I had one grand mal seizure and three focal seizures that affected my left leg. No bleeds but a very tiny aneurism. It measures 3.0 x 3.8 cm. Meds are controlling the seizures with few side effects (sometimes it feels like my head is being squeezed and feet tingle)
The neurosurgeon says the size is large enough not to worry about bleeding right now but is on the large size for radiation. His suggestions is radiation now then recheck in a couple of years and if it is still there think about embolization or radiation again. Surgery is not an option because of the location.
I have a functional MRI scheduled and then a meeting with two neurosurgeons and a nuclear radiologist together to discuss what exactly to do. He acts like this is no big deal but it is ME that we are talking about.
I do feel very blessed after reading some of the stories and hardships you have went through but am still so scared not so much for myself but for my family.
I sometimes wonder if we should just leave it alone or is radiation a pretty safe way to go?
Radiation: Least risky for treatment and takes the longest for success.
Embolization: Intermediate risk, sometimes takes multiple embos and/or followon radiation or surgery, but AVM is usually reduced in size following each embo.
He said that they are discovering that embolization before radiation may not be the best because some are regrowing. They are suspecting that radiation may not fully penetrate the onyx as well as once thought. I have not had ant bleeds so I am leaning towards safest.
Radiation worked well on my AVM, I would try it to shrink the AVM. Beware of late stage radiation side effects…brain swelling which caused me constant headaches and tingling in my right ankle and foot. I may never get back use of that leg fully. Looking back I had symptoms but was not thinking clearly enough to catch them. But the radiation probably saved my life so to me it was worth it.
Well after a wasted functional MRI and then a trip to the radiation oncologist I learned my avm is not treatable by radiation because of the size. Why was the meeting even necessary? It was like the rug was pulled out again. Shouldn’t this had been told to the nuerosugeon?
Almost 4cm but right under motor strip. Lucky it was larger so less risk of bleeding then too large for radiation. What?
Just mad that this wasn’t all discussed beforehand. Why schedule a consultation when they can’t do it. Why don’t doctors talk instead of just passing you on to someone else. If even one doctor says radiation level is too great not sure i would trust another doctor who says it isn’t.
I want real numbers on bleed risk for person over 40 with lager avm who has not experienced a bleed.
Yes. I understand your frustration. My first radiologist said not sure if AVM, second opinion and 3 radiologists agreed in 10 seconds it was AVM. Mine was small 5 mm by 15 mm but leaking. Mine was under speech, therefore the slurred speech. Interesting how larger LESS likely to bleed. I am praying for you.