I had my angiogram yesterday. Once I had finished my angiogram one of the senior neuro-radiologists came to see me who was reviewing the scans as they were being made. My neuro-radiologist is on holiday for the next two weeks so he couldn’t preform my angiogram himself. The neuro-radiologist who came to see me is more senior than my neuro-radiologist however he is less specialised in AVM’s compared (but still a valuable opinion).
The nidus of my AVM has significantly reduced aswell as the flow through it which is good. He explained my AVM as being widely dispersed, since it was large despite having a smaller nidus there are still many feeder arteries going in around the glue (so the overall AVM is not small). Just the actual volume of AVM has been significantly reduced. Over time if the AVM is not fully treated it will likely grow in size.
I asked him whether it could be completely treated with another (arterial) embolisation. He said the chances are very low in his opinion. There are too many feeder arteries and if they aren’t all closed off then more feeders will form.
There is a possibility with an alternative venous embolisation (where they glue from the vein end of the AVM) since there are fewer exiting viens than feeder arteries, it logically should be more likely to work. However this route is very cutting edge, as in there are only about 100 recorded cases of it being done so the risks+success rates aren’t very known yet. The board would unlikely accept this and I feel uneasy about it too.
Then his opinion on gamma knife - he said he personally doesn’t think it would be successful either. I have just so much glue that it will likely both make aiming the gk to the avm difficult and the glue surrounding the remaining AVM is also absorbent material (absorbing the radiation). He said for example Sheffield hospital (which is the UK’s specialist hospital in GK) is usually not positive about GK used on people who have had extensive embolisation glue treatment.
He believes if I want my AVM completely eliminated forever, the only 100% option is craniotomy. He thinks since it is smaller, lower flow, more stable it should be alot more safely treatable. However he has said he’s not sure whether any neurosurgeon would touch it considering the location.
I am staying mindful that this is not a conclusive opinion: my neuro-radiologist and the board may have a totally differant opinion. I am not worrying but I do feel bummed out. Not what I wanted to hear.
Has anyone been told something similar who has had their AVM partially treated?
Side note: OMG did my angiogram hurt entering my groin. There was so much scaring on my artery upon entering after all the digging around in there that it felt like I was being stabbed the first two attempts to enter until I got a third shot of Local anaesthetic -shivers- they will need to take me kicking and screaming for future angios if I’m not under General. It still aches and its all swollen on my groin. Had no issues with pain the first time!
Thanks for reading,
Lots of Love