Well since I am new here I wanted to introduce myself. I am Kristy and I was diagnosed with AVM December 10,2000. I have went through MRI's, Angiograms, and Proton therapy. I went through MRI's every six months after the first course with proton therapy. I went through my second round back in 2005 and again every six months was MRI check ups. When I had my bleed at the age of 12, I have had serious migraines to where I cant even see. My vision still isn't the same as what it was and my strength has yet to return to what it was. I struggle every day with my emotions and my headaches. I am 27 years old now and still alive and fighting. I have yet to have another bleed which I am very excited about. I was never really cleared by the doctors telling that it was gone. I am scared to go back and the doctor tell me I have to go through all of this again. However, my family is full of fighters. I just learned about this website and about our survivor ribbon which I was excited about. I am scared to tell people that I am becoming close to about all of this because I don't want to be treated different. Growing up that was my experience. Well I am at work right now and if you have any advice for me I would love to hear it. I am just happy that I am not the only one in the world struggling through this.
Kristy, I also had an AVM far back in my brain and was treated by Proton Beam Radiation. Wishing you the best.
Had my AVM on the left side of my brain in May of 2000 Same year as yours. Hope things are going good for you now.
Dear Kristygirl, all I can tell you is that you don't have to be scared to tell people your situation. I am 23 and I've told my story to my boyfriend and my friends, but since we live in a small village, informations-sharing is really fast ;) and I'm happy to share my story with people, because by doing this I can feel them becoming more aware and conscious about AVM, considering that the majority of people does not even know what is an AVM. Nobody tearts me in a different way, I'm sorry that somebody did that to you. But believe in yourself, be strong and never give up! If you smile at life, life will smile at you too :) xx
Welcome to the family and good to see you fighting the good battle…best advice I can give is to stay positive & put your faith in God that everything happens for a reason & there is light at the end of the tunnel…God bless!
Hi Kristy, And firstly thanks for sharing your story with us :) , Welcome also !. I can imagine that having that type of treatment can make the whole experience somewhat longer. I just spoke to my wife recently about how I feel my vision has changed since my bleed and how light affects my migraines. I find it harder to drive at night now as for me it seems there are issues with other peoples lights, Then I realise that its juts my eyes or the way I see the lights brighter now :( , This doesn't stop me or make it unsafe just harder to do and I need much more focus now rather than having a relaxing drive almost all are stressful. Anyway I hope your doing well, and I bet that having to go through this at such an early age has made you a much stronger person :) . Take care
Keep fighting. And I will say to you as a person that has had my avm for 7 years, keep going to the doctor. I did exactly what you are talking about and did not go for more tests for 4 years. I figured out of sigh out of mind. Well that caught up to me last week when I had an emergency embolization on one of my feeders. I also just found this group and think it is a great outlet. Since no one can see our avm it is hard to talk about it with others. It is so rare to hear anyone talk about an avm, it is hard to think people will understand. It is in our bodies and we do think about the chances of a bleed from time to time. I think talking about that honestly here, will help. I agree that I don't like to talk about it. But recently as I was admitted to icu for surgery, I had a lot of explaining to do. Since other than from the waste down not working, I am totally health. Keep up the good fight and keep us posted!
Thanks for posting and joining. I recently joined as my son who is 12 years old was diagnosed with AVM and its untreatable. Everytime I want to talk about it he said "mom I don't want to talk about it but I know I have to be careful". He said he doesn't want to feel out of place. He cannot do any contact sports. I am worried that it will bleed or hemorrhage. Anyway, reading your post makes me feel a bit better knowing that my son is not the only one that feel out of place at that age.
Welcome and keep up the fight…we are all here to help each other and sending prayers your way… God bless!
I can certainly see both sides of the decision. It’s your body, so you’re the one who has to be comfortable. You could call a doctor, explain and ask for a recommendation. But if you’re feeling good and not having any symptoms, waiting could be an appealing option. Tough choices all around.
Welcome to the group! Everyone here is very supportive and know what you're going through! I didn't have my bleed (aka brain blowout) until I was 42 but I'm still dealing with a lot of what you're mentioning. Just stay strong and be thankful every day that you are still here and still functional. It's my ongoing joke to myself that every morning when I wake up and can still feed myself and wipe myself it's a good day :)
But it's just a matter of taking care of yourself, listening to your body, not worrying about what other people think when you take the time or modifications that you need. And a good dose of stubbornness :)
Thank you for sharing . You’re a proud, brave and strong person.
Most people will not understand but how can they? However some will surprise you in touching and remarkable ways.