I just had a visit with the nueroloigst and it didn’t go as I wanted it to. First this whole avm nightmare started back in 2006. I know I should be thankful in so many ways but sometimes it all seems like to much. Anyway I just learned that I need to wait another year for the radiation from the gamma knife to have its full affect. Even though in the last year from my mri in march 08 to this recent one in march 09 there hasn’t been a change. They did say 2-3 years for the radiation to work but he also told me that I will more than likely need another round of it. So that means 5 years of my life will be spent dealing with this. I know I have a lot to be happy about but I’m still upset about this info. And they keep expressing how big the avm is (4-5 cm). And I jsut found out that my headaches could last for the rest of my life. Some days I need Vicodin or Lortabs to get out of bed or just to be comfortable. Who wants to spend their life needing drugs. And the worst part is I never know when its going to hit or how bad it will be. Everything with this avm is just waiting! I want control of my life back. Some days I feel like I’m letting down my great husband and our wonderful son. I’m not the mom and wife I use to be. I want that all back. And who knows if I will ever be the same woman again.
WAITING …oh yes that is a part of our lives now. I keep thinking,ok this MRI will be the one ,only to hear no change.I am due for another MRI in June;but I am going to wait till August Because that will be 2 years since radiation. I’f Doc says 6 more months…I will wait again. ALL WE CAN DO IS WAIT I do understand what you are going through.
I hate the waiting. I don’t understand why my doctor just won’t do the radiation now. Instead of 2 years of my life being held in this nightmare, he decided to add on a whole another year. The worst part is my husband and I were trying for our 2 nd child for about a year and a half. Then we finally started to see a fertility doctor, the very next day we found out about the avm and told no more babies till it is gone. So I carry the guilt of not giving my husband the family he wanted and not giving my son the sibling he wants. I know he is only 4 but he has asked for a baby brother to many times I’m so happy to have him seems how pregnancy could have been a lot worse. Like either one of us making it.
Andrea, I can definitely relate to this waiting game as we are doing the same thing with my son. I do think the doctors need to wait until the affects of this radiation are finished before they know where to target where it didn’t work.
BUT I get that the waiting is crazy. We were told that the next angiogram would be after 4 years so I always think that the potential time line for us is 8 years or more… drives me insane to think of this.
My only other thought is that the less radiation on his brain the better. Do you have the option of considering surgery if this radiation doesn’t work?
I am so sorry that this has put your baby plans on hold. That must be so difficult and not at all what you had planned and as a mother I can totally understand that and I’d be so disappointed too.
Finding out about this AVM has changed our lives. I was so bitter that this had happened to my son and it took me a long time to get over that his life was so changed. But there is a reason that this has happened and someday I will know what that is and you will too. It’s a daily struggle as I’m sure you feel too. It’s okay to be mad and lose your “thankfulness” for a bit… you’re only human and it is so unfair and dealing with the pain of headaches must be so tiring too. THinking of you Andrea.
For my avm its do deep in my brain that the only choices we had where the embolizations and gamma knife. We have done both. i also had an aneurysm that my husband and i weren’t aware of they treated with out letting us know. I guess in some ways that was good because it was one less thing to stress and worry over. I know they say the smaller it gets the more radiation they can use towards the next round but, i just want the process over. And i agree the less radiation in the brain the better. Luckily there hasn’t been any damage from the radiation, but of course that can still happen. Some days that’s all i can do is think about the “what ifs” if this happen or that happened. I get another angio next march and then right after more gamma knife. I think this time will be a bit harder only because I know what is coming and how it will feel. The first time was bad enough. this whole situation has definitely put a strain on my marriage we both deal with it in different ways and everything. I’m sure you in the same place. I feel like my emotions are always on a roller coaster that i can’t control. I just don’t feel like me. Thank you for reading this it feels so good to talk with others that understand, and are there even if its though the web! I’m also thinking of you and your family. i would never want my son to go though any of this mess. Your a strong woman and mother!!!
I truly understand how frustrated you are, Andrea. I sure do miss the old me too! My AVM was too large for any of the conventional treatments, so the doctor decided to try proton beam radiation. You can read more about it on my page, but I’m doing the waiting game like you. It takes 3 to 4 years to work, IF it works. If it doesn’t, then we’re back to the drawing board!
Now that was depressing…let’s look at some positives. I have been dealing with this for 3-1/2 years. During that time, I have become more patient with others, my marriage has improved (my husband and I have become closer and he has really stepped up to the plate taking care of the things I can’t do anymore), I’ve become closer to God, and I’ve made so many wonderful friends on here…people who totally understand what I’m going through.
Lecture over. lol Welcome again, my new friend
I understand Andrea. Some days I’m thankful and some days Im pissed. LOL
I’m 50, I’ve spent my whole life raising my kids, my youngest is almost 18 and taking care of my Mom on some level since I was 27, my Mom has been paralyzed for the past 12 years. Thank God my 22 year old daughter has stepped in to help me and my Mom.
When I think about it, I have more to be thankful for than I have to be pissed about :), I’m sure you have more to be thankful for too. I do understand why this gets on your nerves, when it gets on your nerves, except that it gets on your nerves, let it out though, talk to your friends on the site, we understand.
Thanks Ameenah. Everyday just gets to be a challenge ya know. Like will I feel good today, meaning is my head going to be killing me or will it be mild to where it won’t affect anything. That’s what I hate. And I think I finally realized that this is now the “normal” me. I can’t juggle 10 things in a day. I have finally learned that I have to do one thing and not rush. Just one day at a time!
Yes, one thing and one day at a time !!!