I have a question about my hubby's avm

I have a question. My husband has alot of problems with the heat. If he stays out in the heat for very long he gets weak and shaky. Does anyone else have alot of trouble with that? He also wears out easily even though the tries to walk as much as possible. He has headaches pretty much daily some are unbearable for him. He has not had surgery or any other type of treatment yet. His dr doesnt want to do anything until absolutely has too. Where he goes to the doctor they dont have the gammaknife but they have the cyberknife. His dr does not see these as an answer for him. They will have to be surgically removed. The one on the left side of his brain can be checked to see if it has bled, but with an MRI. The other one will show outward signs. We cant really get a straight answer about that one (its behind his right eye). We are so scared. We live about 200 miles from his doctor, so we are constantly worried that if he has signs how quick will they local hospital get him where he needs to be. His neurosurgeon is a good doctor. He was #3 in the country last year. He only does AVM’s. I know i have rambled on and i am sorry. Does the scared part EVER get any better?

“Does the scared part EVER get any better?” That is such a good question. I would say that you learn how to manage the scared part. I think you do this by taking each day on it’s own. I really work on not looking at the big picture. My focus is making my son as safe as possible today. I find that educating myself as much as possible is a huge help altho scary in itself. And this site! That helps me tremendously because I think about this constantly and it is my outlet for thinking about it without troubling other people.

Now I really can’t help you with the heat issues that your husband is having. The brain is an amazing machine and I am a firm believer that if you are feeling something, there probably is a good reason. My thoughts are with you.
What age is your husband?

Thank you so much! We have learned alot since all this has happened. And also from this site. We have found that there is alot we didnt know. My husband is 45 and was diagnosed last May. He was diagnosed April 23 with the second one behind his right eye. Everything started all over again even worse this time. Being scared like this no one knows what its like until they go through it. We also found out that my husband has had a mild heart attack. So that got added on. But they did do a lexiscan and about 2 weeks later a heart cath. Thank the Lord they both came back great. So we know that stress was the culprit. I try to do what i can to help but its hard when i know he is worried and upset. We have also started counseling. That is helping. We pray alot and our church never fails us. We will keep you in our prayers.

Hi, Liz. I was diagnosed almost four years ago at age of 46. This summer is the first time I’ve had trouble with the sun…even with a hat on. I felt like my scalp was burning after about 30 minutes sitting poolside with a hat on! The temperature that day was only in the low 80s.

It worries me because our family is on a beach vacation next week. I don’t want to male like a vampire and only come out at night! lol