Confused

Hi everyone,
I had a consult with the Radiation Oncologist who would perform my stereotactic radiation. We went over the procedure and how I would need the head frame (halo) and of course went over the risks. My confusion lies here… I was told there is a 5% chance that the radiation could affect normal surrounding brain tissue and if that were to happen I could have a stroke. Now if I leave the AVM completely alone I have a 4% chance of a bleed which could lead to a stroke. So my question is why would I get the radiation if my chances go up a 1% or am I not understanding this correctly? I next meet with the Neurosurgeon and I will ask him. I have never had a bleed and other then the two episodes I had in 07 and 08 I feel great. I had two embolizations and since then I feel even better! So what would you do??? Should I have the radiation? It would take 3 years to see any results and that’s if I’m in 80th percentile since there’s a 20% chance it wouldn’t work at all.

Hi Rachel,

I know it’s hard to decide. You might consider that the risks of the surgery are actually much lower than the risks of long term damage a bleed might cause.
If you keep up on here, many of us suffer much worse effects after a bleed than those who have had the surgery before a bleed.
I myself had the stereo-tactic radiosurgery myself but only after a massive bleed. It is the least invasive procedure to have and is safer than other methods.
The full effects do not finish until the 3 year mark but results can be seen as early as 6 months to 1 year. It just takes a full 3 years for the radiation to stop working and see the final result.
My AVM was bigger than an egg but smaller than a lime and at 1 1./2 years we saw 50% shrinkage and at the full 3 years it had shrunk between 80 & 85%.
Are you home free after the 3 years, probably not but the smaller the AVM the better and for some it completely disappears.

It is most definetely a personal decision and you have to go with your gut feelings on it but I know the normal recovery time for a non ruptured AVM and the radiosurgery is pretty short as in weeks, not months and months or years for me after a bleed.

The risk of stroke is alwaqys there when they do surgery but your recovery chances are much better now thand after a rupture.

I know it is scary when you feel fine. Try to read on this site from people who had it before and after a rupture and see the difference and maybe that would help you with your decision.

I wish you the best f luck no matter what you decide and we re all here for you eitgher way

I am in the same dilemma, never a bleed, seizure or stroke. I am considering Gamma Knife as I have been told that is most precise for the area where my AVM is. It is a 3 on martin-spetzler scale (small but in a deep, eloquent location) FYI- I found a website called irsa.org which answers alot of questions and a contact number where you can call with questions. Good Luck to you !

Like one of the previous posts said this is definitely a personal decision for you to make, and there’s only you who can make it.

My avm bled and within seconds I had lost part of my eyesight. The damage is permanent and can never be fixed. 16 months later I’m still coming to terms with what’s happened and the fact that my life will never be the same again. It’s affected every area of my life, from my physical health to my relationships with other people. I wish I could have been treated before this thing completely turned my life upside down. Yet still I consider myself to be lucky. Things could have been worse for me. My avm could have bled while I was out driving the car, with my children in the car, while I was crossing a road, while I was in work, basically anywhere. There are many people on here who are a lot worse off than me, and these are the one’s who survived. Unfortunately the people who didn’t survive can’t tell you what they would have done in your situation.

That is a toughie. Working with probabilities is, at best, a guessing game. Even if something carries only a 1% probability of something bad happening (and that is 99% probability of nothing bad happening), someone still has to be in that 1% group. But here are the issues to consider, as I see them:

a) once you’ve had a bleed the probability of having another bleed is higher than if you’ve had no bleed before

b) if you do not have the radiation, is it possible for the AVM be able to be obliterated by any other means? If not, are you wiling to continue to have the ticking time bomb in your head forever? Or are you willing to risk the ticking time bomb for another 3 years in order to have it finally eliminated?

c) is the AVM currently causing you any neurological deficits? If so, are you willing to have those deficits continue, either at their current level or possibly getting worse?

d) if the AVM is causing neurological problems, is their a high probability that those problems would be reduced or go away if the AVM is obliterated? If so, is that good outcome desirable enough to take the 5% risk for 3 years

No one can possibly tell you what you should do. Only you can weigh the benefits vs the risks and determine which is preferable to you. Unfortunately, the once certainty is that, no matter which choice you make, it all sucks! That’s probably the most frustrating thing of all about this whole AVM stuff.

I wish you good luck with your decision making process.

Yes It can only be your decision,and not an easy one to make.I wish there was an easy answer,as everyone says with this AVM stuff none of it is easy or goes the same way with each of them.They are all so different.But I think you can take it all in and can have some questions answered to some degree.It is better then not having any idea or answers at all,which is why this site is so wonderful!!!

I would think though that a bleed causes much more damage then not…Britt thankfully did not have a bleed yet and had Gamma Knife.So far (it has almost been a year since the Gamma) she has done good.The side effects have been minimal so far and I think she is having less headaches then she use to.I think the physics and doctors are so precise with the Gamma Knife,but of course can’t say perfect because they are human.

I wish I could give you a straight answer like all of us wish…Let us know how it goes and what ever you decide,may the very best come out of it!!!

A couple of things…
We were told that the risk of the AVM bleed is 4% per year and that this is accumulative, meaning that each year, the risk is higher- 4+4+4… We were told that twice.
We were not told that Gamma could cause a stroke in the surrounding brain tissue and my son has had Gamma. We were told that it can cause a cancerous brain tumour later in life, which is horrible but a risk we decided to take.
It was my understanding that embolization is not necessarily a permanent solution because the body breaks it down.
I guess if it was me, I would never forgive myself if I could have done something proactively and didn’t and then went on to suffer a castastrophic bleed and was not there for my children.
We had to make this decision with our son who had not had a bleed and only had one seizure prior to Gamma and it was an insane decision to make. But we made it and I try really really hard NOT to look back and second guess myself.
But everyone IS different and maybe you just need some more information in order to make this decision.