Here is an actual image of my AVM from the angiogram images. The dark patch in the back of my brain is the AVM cluster (nidus).
First, the bad news:
- My AVM nidus (or the AVM nest) was actually larger than the MRIs had indicated - 5.9cm x 4 cm x 3.9 cm
- Remember I had mentioned in the last post about how the nidus was spread around a bit instead of being in a nice little clump? It turns out there is actually a term for it - Diffuse AVM. And mine was diffused quite a bit in my Occipital lobe.
- She said it is at least a Grade 4 AVM.
- Given its size and its diffused nature, she immediately ruled out radiation (Gamma Knife) as a treatment option.
- Again, given its size and diffused nature, she said the treatment, if it were to be done, will involve 3 or 4 separate embolizations (spread over as many months) and followed finally by a craniotomy
- And the craniotomy itself will be major surgery lasting several hours
- And finally, with the treatment, there is 80% chance of me losing good portion of my left side vision
At this point, I was ready to stick my fingers into my ears and sing something loud.
Now, the good news:
- The speed of the blood flowing through the nidus is relatively slow, so the risk of bleeding is a bit lower than usual.
- Given how messed up my nidus is and all the risks associated with every step of the treatment (each embolization carries the risk of hemorrhaging, vision loss, etc.), she recommended that I leave the AVM alone and not treat it at all. Do nothing? I can do that.
In short, the risks associated with the treatment outweigh the benefits, so it is better to take my chances (and push my luck) with an AVM rupture in the future.
My feelings were mixed at this point. I was frustrated a bit since I couldn't get it treated, I was relieved a bit since I didn't have to get it treated, and I was scared a bit since I will have to live with this in my brain for the rest of my life and it could bleed anytime.
And then she said something that, I felt, pushed me back to square one -
"My recommendation is to do nothing, but you will find a lot of 'trigger happy' neurosurgeons who will encourage you get this treated soon. And don't think I am afraid to treat this, I just think it is better if you leave it alone"
Sigh. Thats when I realized she never used the word "inoperable". But I was glad that she was being honest and open about this. She advised me to get a second opinion and recommended another neurosurgeon (her mentor) in another Swedish hospital in Seattle.
So, now I will have to get another opinion (or two). But I am going to cast a wider net across the US and look for hospitals and doctors who specialize in treating complex AVMs.
