My son is going to have radio surgry soon and I'm scared!

My son will have his surgry soon, thursday they will call us to tell us what is going on and what day it will be. His brother and he are very close and when we went to see the doctor he spoke to us a little and then my older son asked me and my youngers son, the son with the avm john-paul to leave the room. John-paul always lets Donald his older brother kind of father him and will listen to him over anyone. I only wish Donald would visit this site so he would have a better understanding of what could happen. I guess the doctor told him he could go blind or forget who he was and who we are and many other things, but if he didn’t have it he would not live. He has three feeders and all are in very bad places in the brain. I had to take a valium just to cope today I’m so afraid.

His girlfriends mother wants to take him and her family to the Bahamas, I can’t afford it, but I can’t let him go with his chances of dying and be without me. I don’t know how to tell her how affraid it makes me that should something happen he would die. Know hospital on the boat. She is thinking it would help them to get away because they have been through a lot and is evening paying for him. I know it is her 25th wedding anniversary, but I just really think it is a bad time for him to go anywhere, maybe now that he is having the surgry he won’t go and I could be at peace!

The doctor said that the odds didn’t matter, because if the odds were 70 to 30 and he happened to be one of the 70 he would be one of the 70. But if it were 90 to 10 and he happened to be one of the 10 what difference did the odds mattered. What matters if he doesn’t do it he will die and that is 100 % sure.

So please, please pray for us!!! And God Bless All of you!!!


Hi Susan,

If my daughter were going through John-paul is going through at the moment, I’d be scared, too. Since my AVM was not in my brain, I don’t feel qulaified to tell you what to expect from the surgery and the recovery afterward. But my family had an experience similar to the trip to the Bahamas that your son’s girlfriend’s mother is proposing.

My grandfather had been bedridden for quite some time. My father got the opportunity to teach for a year in Hawaii. So even though he was not in the best of health, my grandfather decided he was going to go with Grandma to Hawaii and see my parents. In Hawaii, he didn’t feel well and had to go to the hospital and ended up dying a few days later after getting back home. I personally think he did the right thing. My grandmother had a picture of both of them wearing leis after they got off the plane in Hawaii. Both of them were very happy.

All I know about cruises is from watching The Love Boat. But from watching the show, I remember that there was a doctor on board. If that is true in real life, and John-paul ends up going on the cruise, perhaps the physician could be apprised of John-paul’s condition beforehand, and a contingency plan could be made in case something happens. AND I would ask his doctor if it is OK for John-paul to make a trip at this time.

I will pray for John-paul, you, and Donald. Peace be with you.

Take care,


Susan- I’ve had radio surgery twice. Everyone is different but when I look at the odds for your son, they sound pretty good. I think many doctors cover their a#% by giving you the worst case scenario. It sounds like their is some risk of it affecting his eyesight and he/you need to be prepared for that, but I doubt it’ll be like him walking into the radiosurgery with eyesight and walking out without it. The radiosurgery dose is small, that’s why it takes so long for the results to be seen.

I have double vision as a result of the original bleed and the radiosurgery exasperated it - no doubt. I just had the 2nd back in August and I am headed to the eye doctor today to get new glasses because my eyesight has changed. But it beats dying.

As far as the cruise goes, personally I’d go. The odds of something happening during those exact days are pretty slim. I’d get a health insurance policy that covers him outside the US (most work policies don’t cover outside the US.)

In any case, I’m thinking of you and sending lots of positive thoughts!!!