I need help

I am 14 years old. I was recently diagnosed with an A.V.M and now I’m afraid of life. I need someone who has been through the same thing to talk to. I don’t know how to deal with the emotions that I’m feeling. I need help. I’m afraid of everything, and to make matters worse, my ex boyfriend who I had been dating for a year broke my heart today. Can anybody help me?

Brooke, AVMs are scary things, but you can’t let it take over your life & keep you from enjoying life.

I just found my AVM in April, but didn’t have the scary situation you did. I had Gamma Knife in June & a craniotomy in July for two aneurysms caused by my AVM. Neither embolism or crani is an option for my AVM right now. Gamma Knife is fairly easy. For me, the worst part is having the halo attached to my head. (Ask them for some meds in your IV just before they do the lidocaine shots in the head). Gammma Knife is a boring day.

I haven’t had an embolization, so I can’t really say what that will be like, but my internet friend who had one was up and around a LOT quicker than I was post-crani. I was at a dog show 2 weeks post-crani (but really weak), at dance class 2 weeks after that, and back to teaching school for the start of the school year 6 weeks after surgery.

Honestly…the only thing the AVM is stopping me from doing right now is diving. Before the diagnosis, we had talked about going on a short SCUBA trip this summer since we haven’t gone in 5 years. Instead, I had surgery. BUT, I am dancing, and teaching, and driving my car, and living my life. I have had a lot of support from friends & family.

As to the boy–well, he’s a teenage boy. They are just goofy. And he might be really scared of all this, too. Or–if he’s just a jerk, you don’t need him around anyway. You deserve better.

You didn’t say if you are actually attending school right now–if so, schedule an appt. with your counselor. Even if you don’t want it to talk about the AVM, the counselor can be an adult to go to so you can get the feelings out. I’m guessing you are starting high school this year, too, which can be a big change. Find an adult on campus you can talk to. It will help. If you were at my school, I’d tell you to stop by my room to say hello.

Join a club at school–it will give you something to look forward to.

And if it were me…I’d dress us super nice for school on Tuesday to show the guy who broke your heart just how gorgeous you are, and then ignore him. Hang out with your friends.

So not that this is a bad thing, but you made me cry. Thank you so much. I really appreciate it.

Sometimes a good cry helps.

I cry too much.

You will through lots of emotions and they are all ok. AVM’s are terrifying. They are not common so it’s hard for our friends and sometimes our family to understand. Try journaling or blogging your thoughts and feelings. Don’t edit yourself. Lots of hugs to you xo

I was diagnosed with my avm in January at the age of nineteen I kinda know what your going threw because the following week after I found out my ex boyfriend of 3 years broke up with me. Stay strong and I know your feelings and emotions are crazy right now. But don’t worry about a boy you need to stay strong and take care of yourself

It is alright to cry but if you feel severely depressed and sad then talk to your parents and doctor about it. I want you to look up a phrase…Carpe Diem. Let me know what you think it means!
There are 3466 members on here…that means 3466 survivors so you are no longer alone!

thank you.

thank you.

thank you.

hi there. i had my first bleed at 17 - lost the power of speech totally at 18 or so. That sucked. But life is life - we will all eventual cease to be on this plannet, its a fact. Its inevitable. So i figured to my self, well, why bother feeling bad about my AVM, when i can still walk, can still run; can talk (sometimes); can do many things. And having an AVM, and im still here and can do many activities, everyday is a blessing. Try to stay positive, i do, helps me a lot.

thank you.

Hello Brooke…I am sorry u have to go througth this, it´s a really worse thing that happens to u. I am 38 - I was diagnosed with my AVM on my 38 birthday - and the same day my love broke my heart tooo, so believe me - I can really really understand what u feel at the moment. It was the hardest time I have ever been through and I imagine it is even harder for u - so u are only 14. I was very desperated and depressed the first weeks nd i t helped me a lot to be on this side. I could read about others and connect with them. It comforted me and gave me hope for this journey. I am going to have my craniotomy on the 6. October and I am pretty scared. At least sth can and will be done. Believe me - things get easier with time, i couldn´t believe that when some good friends on here told me that when i was totally down and lost, but it´s true. U have to stay calm and positive. Its all new for u atm, but it u will learn to get used to it and to live with it. Keep ur faith and stay strong. U can text me everytime when u need support or comfort. Hugs ur way Manux

Hey Brooke,
Your post touched my heart so very much. You’re special for having your AVM and smart enough to know when to reach out to us all on here for help… When my avm was diagnosed, I was married to my highschool sweetheart… We got married in 2006. We are now divorced…why? because it was too much for him. I dated a guy last year who told me about how much he wanted to be there for me. I had to go into the hospital for another bleed and then an embolization and then he broke up with me. At first I was sad but then I realized why would I want to stay involved with someone who promised me forever but what he meant was “until I can’t handle it” and then someone who I’d started dating and showed me right off the bat that he couldn’t be there for me. Consider yourself lucky my dear. Think of the entire population of the world… now think of the number of us with AVM’s. We are kind of the chosen few who God believes have enough strength to get through this and then be a motivation to someone else. You’re still young and have many things in life to experience, many places to go and many people to meet.
I’m even receiving flack from my mother of all people right now. I wasn’t feeling well off and on yesterday and of course she knows all of the symptoms but she accused me of faking it so that I could be lazy. Do not be afraid of life. Life is a beautiful thing…sometimes scary but a very beautiful thing. Your emotions and fears are valid so don’t let anyone tell you they aren’t Be the best you that you can be. I hope this helps a bit. Hugs and prayers to you.

Hi Brooke!

I’m sorry you’re going through such a strange and scary time, especially at such a young age! I’m sorry you had your heart broken - you sound like a very sweet person. I hope your friends and family are helping you through this - they won’t understand exactly what it’s like and that can be frustrating, but I’m sure they want to help as much as they can!

I’m 25 and found out about my AVM a couple of months ago when I had a seizure, but I was lucky - no harm was done and I feel absolutely fine. I’m seeing a neurologist in a fortnight to find out if there’s anything he can do about it, but I’ve heard he’s very nice.

It’s completely natural to be scared when you find out about something like this, but you’re definitely not alone and you don’t need to go through this on your own! Take care and I hope you feel better soon. x

Hi Brooke,
I know having an AVM is very scary. Especially when experiencing what you went through. Rest assured that all of us on this site understand what you are going through and have been through similar with our AVMs. I am 24 and was diagnosed in February of this year. I had been having seizures when I was younger (1-5 years old) and no one ever knew why. I started having migraines at 13 and other conditions related to my AVM(cant have kids because of them) but with that came anxiety much like what you are going through. what treatment to have, what not to have. scared wondering if this headache is the one meaning its bleeding or am i having a stroke when i get these headaches. I can understand that. but the best thing you can do that will help calm you is to do as much research into your condition as possible. Mostly what we are scared of is the unknown. The more you know the better able you are to help yourself. The more knowledge you have the more you can know if the doctor you have is the best for your condition, whether or not you should have that treatment, what medicines to take or not to take based on your AVM and its location. Of course you will come across horror stories, information speaking of those who have died and those who have had surgery with bad things happen. But this site is wonderful because it talks about MANY people who have had AVMs treated and are doing well without any major difficulties. So just hang in there and whenever you are scared just know you can message me and we can talk bout it i am a good listener. hang in there the worst will be over soon.

Hi Brooke,

Our son was in middle school when he started having seizures (it wasn’t AVM related). A few of the kids made fun of him, but he told his friends what his medical condition was, and how they could help him if he had a seizure around them. The TRUE friends understood and were there for him. The others he ignored. I think that’s easier for boys to do than girls.

In high school, his buddies knew of his medical condition and it didn’t bother them. When you look around, other kids are diabetic, or have some other medical issue. His (and yours) is just different.

Try to learn as much about AVMs and treatment as you can. It might be good to write a letter to give to each of your teachers so they know what’s going on. I’m sending you a friend request. When you accept it, I will send you a draft of what he used for his letter. It might help you identify what you need to say.

Stay strong. Boys are IDIOTS, and yes, I am one. I like the idea of another poster here. Dress HOT on Tuesday–show him what he’s missing!

Best wishes,
Ron, KS

Oh honey … please know that these feelings and emotions you have are very normal!!! Maybe looking at your recent diagnosis in a different way may help you a little bit — that being, your AVM has been diagnosed and you are moving forward with a treatment plan so that it won’t cause any future harm to you! I was diagnosed this past Feb and my doctors said something to me when I was feeling as afraid as you are right now --> they told me that I was probably going to be the healthiest I’ve every been in my life now that my AVM was diagnosed and was proceeding thru treatment. I had an embolization back in Feb and CyberKnife treatment in June and am now just waiting for the day for the docs to tell me I am AVM free :)))! Cyberknife is very similar to Gammaknife in that it is radiation treatment to destroy this creature that has been causing me so much fear and anxiety!!! AVMs are very scary and you’re so very young to have to be dealing with all of these emotions --> please use this support forum to ask any and all questions that you have to help you thru this trial in your journey thru life. And as far as your boyfriend goes, it is his BIG loss and just keep moving forward and don’t look back :)))!!!

Hope this helps a bit.

/Michele

hi Brooke… don’t afraid…you not alone…my brother 17 years old…get avm at left leg from childhood…he cant walk or stand at all…cant go to school or out of our house…so you are lucky… appreciate your life and fight.