I am wondering if anybody has tried or experienced a treatment with embolization first followed by Gamma knife radiosurgery (GK)?
I have a large AVM on the left frontal lobe. No rupture experience. I had a few seizures and I have been feeling some weird numbness on my right foot. My Drs have suggested a treatment option with embolizing a high flow fitsula and then GK to remove the nidus and the rest of the AVM.
However, I sought second opinion and I was told embolization is risky, and I should only be going under GK.
Sharing any information about your experience or anything at all is much appreciated!
Welcome Jado! I had an AVM on the inner portion of my left temporal and went with Gamma Knife in 2016. Embolization followed by craniotomy is common, and some members have had embolization and gamma. Can’t help you from personal experience, sorry. My gamma knife was successful and I received the all clear in February 2019. Take Care, John
Thank you, John! It’s wonderful that you are all clear now!
The issue is that we are getting different opinions, and this has made it so difficult to make a decision eventually. I talked to the Drs and told them about the second opinions we got, but they still insist that their recommended treatment is the way to go. It’s quite frustrating to be in such a position as a patient…
If it is any consolation, I find even the “have intervention v don’t have intervention” choice pretty hard to make, so I don’t envy you as to having different doctors with such opposite opinions.
Couple of things come to mind:
Is there any information available as to success rates or other performance criteria for the people you are having to choose between? I don’t know how choosing a doctor works in Canada but if there is any information that helps you choose one v the other, you might look at that.
You could get a third opinion. Horrible idea but it might support one side or the other. I know that some of the neurological institutes in the US offer second opinions remotely at a pretty sensible price last time I looked. So for $200 you might get a third opinion that points to one or the other.
Sometimes it comes down to the skill and confidence of the doctor. I seem to remember that Dan @memyselfandeye had an operation undertaken through his nose that one of the other surgeons said “there’s no way I would have done that op” but it was successful.
And the final thing in my mind is the “non-functional” (this is an IT term) parts of having your op. Even if your doctors are giving you all the info about what they propose to do, and how (this is what we call in IT the “functional requirements”) some part of the choice is about which one gives you confidence. You need to be confident in your doctor, so maybe choose the one that gives you the best comfort; or include that thought in the balance of how to choose.
However, it’s your choice and I would also say never regret the choice because nobody really knows which is going to be best for you. Whichever one you choose could be fine; whichever one you choose you could have some side-effect.
Hope something in my ramble might help
Thank you so much Richard.
It is indeed a very difficult decision that involves emotions and puts one in turmoil. I have tried to be rational about it as much as possible. Unfortunately the medical science is not as advanced as one would hope, so there is not much statistics or data available on them. Even when reading published papers, they are all specific, and lack tons of key details, and are incomparable to one another.
Anyhow, thank you for your kind words and help
I know what it is like. It’s almost a stupid thing that regular people have to make choices like this. However, you can do it.
The other thought I’d offer is that while the information is not perfect, I know my grandfather had haemorrhagic strokes over a number of years and in the time that he lived, they didn’t even have the technology to look inside and see what was going on, never mind do anything about it. So I comfort myself that we live at the best time ever to have something like this because surgeons and radiologists have the knowhow and technology to help us like never before.
Very best wishes,
Hi Jado. Great to meet you. We sound like we have quite a similar problem. I too have a large unruptured AVM but mine is in the Cerebellum - really deeply embedded. Fortunately its low flow and doesn’t give me too much problem in my everyday life at the moment. But of course I’m always conscious it is there and I also get hydrocephalus because it blocks the normal CSF exit routes. I was once offered GK by my NS but he said I would need at least 3 embolisations first and even then it wasn’t guaranteed they could do the GK. I declined as I decided it wasn’t worth the risk. Subsequent NS’s have advised me to leave well alone because the ‘risks of deficit outweigh the chance of benefit’. I spent a while weighing up my options even so and trying to decide whether I should pursue intervention. But in the end the odds just weren’t good enough for me. So I’m living with it and will have to take what’s coming. Best of luck with whatever you decide xxx
Thank you for sharing your experience. I completely hear ya. It’s a difficult path no matter what.
I read tons of papers discussing the conservative treatment (no intervention with regular monitoring) can in fact in many cases be the best choice. And it seems like this has been the route for you; so don’t feel bad at all.
Best of luck to you
I am in the exact same boat.
My decision is difficult because no matter what I do there is a risk of loosing peripheral vision.
Did you decide what to do already? I see your post is over 2 months old. My doctor told me, my AVM is 3.4CM, Gamma Knife is not going to work. Period.
No ifs or buts, he said, Period.
Right now I am just trying to see which doctor is good for embolization.
Also, Gamma Knife takes 1-2 maybe even 3 or more years.
Some doctors said just do Gamma Knife becuase of ARUBA trial.
Quite frustrating considering that trial was only 229 people.
And it started 17 years ago.
And the trial never said Gamma Knife is safer than Embolization + Gamma Knife.
But it is difficult when doctors expect you (the patient) to decide.
When I have zero experience whatsoever in medical decisions.
The one doctor that was more adamant is the one that did surgery on my sister (she too had an AVM)
10 years later she is walking and talking.
So I tend to respect that doctor’s opinon.
The idea is when you reduce the flow to the nidus, you reduce the immediate risk.
When you do Gamma Knife with a 20% smaller nidus, then Gamma Knife is possible.
So in theory, this seems like it works.
The interventional radiologist told me since there is not a lot of data he wants me to think and think and think again if embolization is really what I want to do.
That Dr is making me nervous.
He did mention embolization is more common before surgery.