What do you think?

I have been told by my neurosurgeon about my AVM treatment plan yesterday.

Treatment: An embolization & GK
Area: On pons to brain stem
Size: 3 x 2 x 1 cm

Situations:

a) 3% risk of bleeding every year for rest of my life (I am 35 years old right now)
b)15% risk of bleeding by embo & GK about next 3 years

If my AVM bleeds again with the situations either a or b:

About 50% probability=> Death
About 50% probability=> Major motor skills damage/vision problems

My condition right now:
My AVM itself is in a good condition, no dilating, narrowing, or bleeding.
I can walk very slowly and wobbly, but no problem with any movements(I mean legs and hands).
I still have big vision issues, but SO much better to compared of 7 months ago.
My blood pressure is good and stable.
I think I am healthy.

What do you think? Should I or shouldn’t I take those treatments ?

Please give me your opinion/advice/experience…!!

Hi Mariko,

I’m sure all of this must be overwhelming. I don’t have any answers. And ultimately, this is your decision to make. I might suggest getting a second medical opinion.

But you always have my prayers.

Take care,

Debbie

Hi Mariko,

First of all, let me point out the obvious and that i wish you had easier results to deal with. On the bright side, you’re making really amazing progress already. Sometimes, life is really unfair, and I imagine it was tough to hear some of it. I think it’s really important when trying to handle something so difficult to keep your prospective optimistic. So, I’ll remind you that some of the statistics you used can also be thought of like this:

  • Each year, you have a 97% chance of no bleed at all with no intervention, although this obviously is each year on its own, and
  • if you choose the embo & GK, you have an 85% chance of no bleed in the next 3 yrs while undergoing procedures.

Statistically, this means both situations are overwhelmingly in your favor. That doesn’t make it any easier, I’m sure, since it’s just numbers. I am an optimistic person, but I also think that it can help, albeit a little, to see things both accurately and positively as possible. At the end of the day, all you can do is make the best choices given the best info you can get, and leave the rest in God’s hands. I suck at doing this, yet it remains the best advice I have to give.

I have no idea what the right answer for you is, but I would get a second or third opinion to make sure I had a few viewpoints from the ‘best i could find’ to make my best decision. I know, of course, that’s not always possible. I think you’re process is really good. Get others opinions and experiences, and I think it will lead you toward what is right for you, it sort of helps you to really know your own thoughts sometimes plus gives you more insight. I hope you get great help from this wonderful group of AVM friends here. Btw, you being in good health overall is such a GREAT thing, so keep that going. We can’t control everything, but all the studies show that when you keep healthy, it helps you with any health issue you face. I wish you peace and positive energy. I wish you had a simpler decision to make, but you will get through this. I’m so glad your vision is much better, that’s excellent. I was told that good blood pressure was an excellent health indicator, so you’ve got a ton going for you. Keep strong! You will get through this!

Hi, I agree that it might be a good idea to seek a second opinion. Either way it’s an awful position to be placed in control of your own life decisions like this. The Drs don’t always give options so you must face whatever they suggest and in some ways this can be easier. When you have to decide between choices, you have to live with your decision. The voice inside your head will always be wondering if you made the right decision. From what I know about AVMS, everyone is so different and there is no way to truly predict what’s best. Can you live day to day with not having any treatment? Can you live with having the treatment? Which decision can you live with more? Both have enormous mental stress. Obviously you need more time to process everything so don’t rush yourself! BE KIND TO YOURSELF!!! One day at a time.
We’re keeping you in our thoughts and prayers. Keep in touch!!