Hi Bella, I wanted to follow up with you. I had told you about my daughter as we were in similar situations. I felt exactly the same… how can one expert say that even if she had a “perfect surgery” that it would be catastrophic and another say that it was safe (an acceptable risk) and the right course of action? Well, I am thankful that I trusted in the right doctors because she had her surgery, has 0 deficits, and her AVM is 100% gone. We are three weeks out and she’s back to her normal self.
I kept reminding myself that there were risks either way, doing something or not. With surgery, there was more control of the risks, as there would be experts selectively going around the sensitive areas of her brain during surgery. And if she had a bleed during surgery, she would already be in the best place for her. However, if we chose to do nothing and she had a bleed, the blood would not be so selective to protect those sensitive areas and who knows when/where it would happen or how long it would take to get her medical care.
I’m so happy your daughter is cured! I can only imagine the day I can say that. I agree with you and we are going to do the surgery. After hearing all the horror what if’s from some doctors we are ready to take the chance as well. Bella will have surgery in the next couple of months. How long was her surgery?
I honestly wasn’t sure that this day would come.. it doesn’t even feel real yet! She was gone from like 10-7, but they said it was about 1.5 hours of set up (there’s a lot of monitoring devices that they use and they had to prep her hair), surgery, then they brought her over to another room for the post-op angiogram to confirm obliteration, and then they extubated her before bringing her back to us in ICU. She was awake about an hour later! She was pretty out of it for a few days, much more than I anticipated, so just a heads up. Between the brain surgery, high doses of steroids, and lack of sleep, my daughter was an irritable mess and very lethargic. After 2 days at home and some good rest (and less steroids) we were in a much better place! Very minimal pain though, only needed Tylenol surprisingly.
Also, I saw your comment that Lawton mentioned she may be weaker at first. He said the same to us. My daughter was weak for a few days, just slightly weaker on the left side of the body (AVM on right side), but it resolved once we were about a week post op. We were assessed by the physical therapist before discharge who thought it was just related to brain swelling and that it would get better quickly (and it did). But she was very unsteady on her feet for a good week, which made me nervous, but I was honestly just happy she could move her limbs and knew the rest would come with time! She didn’t need any PT