Does anyone else get paranoid that their AVM could be growing back?

I always do whenever I get really bad headaches or any sort of unusual pain/feeling in my head.

It’s been 21 years since I had my operation. Sometimes, when I have a headache in that area, a momentary panic sets it. I think “It’s back again, and the surgeon said the operation was so tough, it could only be done once in a lifetime!” As the panic starts to escalate, I sit down, close my eyes, and bring things back under control. It’s a battle for awhile before things start to slow down. I review all the tests I’ve had over the years. The results that have shown everything clean. We keep copies now of all MRI’s, etc. Sometimes, I pull them out and review them. It takes some time, but getting the breathing slow and doing some prayer helps.

I tell myself “Don’t get upset when it happens. Because it will come and go”. The tests have shown that the problem is gone. Just calm down.

As you can see, it’s always there for me, but I’ve learned to live with it. And in the meantime, I’ve had a family and three kids. Kids are kids and don’t always make life easy. But, they do fill up my time. I just keep going and check in with the doctor every once in awhile.

Hang tough.

Al,
I’m so glad you continue to do well! My husband suffers only every once in a while with a headache and seems to deal with it like you, by calming down and taking it easy and that usually takes care of it. He really hates to take meds for a headache as he’s on seizure meds too so… His AVM was in the left temporal lobe, I see yours was in the temporal lobe as well, left or right? Anyway our hope is one day to be off those seizure meds, how long were you on them and how long since you have been off? Was it the University of VA that you had your treatment? We live very close to there and that’s where my husband had his craniotomy.
Have a blessed day!
Marie

Al said:

It’s been 21 years since I had my operation. Sometimes, when I have a headache in that area, a momentary panic sets it. I think “It’s back again, and the surgeon said the operation was so tough, it could only be done once in a lifetime!” As the panic starts to escalate, I sit down, close my eyes, and bring things back under control. It’s a battle for awhile before things start to slow down. I review all the tests I’ve had over the years. The results that have shown everything clean. We keep copies now of all MRI’s, etc. Sometimes, I pull them out and review them. It takes some time, but getting the breathing slow and doing some prayer helps.

I tell myself “Don’t get upset when it happens. Because it will come and go”. The tests have shown that the problem is gone. Just calm down.

As you can see, it’s always there for me, but I’ve learned to live with it. And in the meantime, I’ve had a family and three kids. Kids are kids and don’t always make life easy. But, they do fill up my time. I just keep going and check in with the doctor every once in awhile.

Hang tough.

Hello,
I had my surgery almost 2 years ago and when I have the pains it scares me to death. The last thing I want to do is go thru another surgery. From talking to my surgeon it is normal to worry about this. There is no time limit on this seeing how people handle things differently. When I get scared I sit down with my children and play a board game. By the time I lose at the game I totally forget about the scare lol. The surgery wasnt just something physical we went through but mental too. Hopefully it will get better for us or we will learn how to cope. The next time you have a worry get on here and talk with all of us. I know this website has helped me tremendously and I have made a lot of great friends. I hope I have helped some. Have a good weekend and take care :slight_smile: