Quantcast

AVM Survivors Network

Hi im Heidi!

#1

Hi I’m Heidi! I’m 10 I found my avm this year. I hope to get to find some supporters!
My mom is going to die in about 3 yrs From breast cancer. I have to have radiation to remove my Avm. I’m excited and terrified to start 6th grade. Have a good day!!

4 Likes
#2

Hello Heidi @HeidiP
Welcome to the group. Sounds like you are going to gamma knife for AVM.

I am so sorry to hear about your mom and about your AVM.

I am in San Francisco and have my treatment done at Stanford.

Angela

3 Likes
#3

Wow, Heidi, you’ve got a lot going on.

As Angela says, it sounds like you might have gamma knife radiotherapy or you might have proton beam radiotherapy to treat your AVM, neither of which are scary by my reckoning. However, whatever you are concerned about, feel free to ask. That’s what we are here for.

You’re definitely not the youngest person to be going through this, though I think you’re the youngest person who has logged on to the site at the moment (we have parents of younger people than you; and we have other people here who are older now who discovered their AVM at about the same age as you).

6th grade is just fine. I assume it is the year in which you move up a school? My son moved school at what in the UK we call year 6. But it is really just a bigger school. You’ll still have friends that move up with you and more people to meet from other schools. He is now in the top year of the school, about to start his final exams and he has had a really good time through that school.

Anything we can help with, just let us know.

Very best wishes

Richard

2 Likes
#4

Hi Heidi, and welcome. You do have a lot going on for sure. How was your AVM found? I had gamma knife for my AVM in November of 2016, and has been successful.

Very sorry to hear about your mom. Take Care, John.

2 Likes
#5

Hello! Thank you for supporting me!!!:hugs:

1 Like
#6

Thank you!!:blush:

#7

Just letting you no was also 10 when I had my AVM discovered. Keep strong and let all of us no how things are going.

3 Likes
#8

Hi Heidi, great to meet you, and I support you! 6th grade is an exciting time, I hope you learn a lot and make lots of friends. So sorry for what both you and your mother are going through. Looking forward to hearing updates from you!

Best,
Jay

2 Likes
#9

Thank you!!! I will keep you updated!!!

1 Like
#10

Hi Heidi,
I am sorry to hear about your mum (fingers crossed she will recover. My mum had a very aggresive cancer and I was told that she would die but she is still living a happy life 20 years later, you never really know what could happen x).
When I was told that I had an AVM it was spooky (especially because I googled it, don’t listten to google!!! we are all diffrent and the Doctors know so much more now about making you better). You are lucky that you can have radiation, it is exciting, you will meet some great Dr’s and Nurses, you will learn so much about all the cool things they use and how it works. You are also speeking/texting people from all over the world, so cool, I am in Australia. I was spooked too but the more I learnt I realised that I was also lucky. I am all better now and teaching nursing you never know maybe one day you will be a Dr or nurse.
Big hugs to you and your mum.
Katusha

1 Like
#11

Thank you! I was scared to when I found I found out I had an AVM. But I’m very brave and confident now that I’ve had some angiograms and brain MRI’s. I will keep you updated!!! - Love Heidi

3 Likes
#12

Heidi, you will be absolutely fine. Take it as a fun ride, It will make you stronger eventually. My mother suffered from breast cancer at the age of 40, now she is doing great. I was diagnosed with a spinal avm 15 months ago, at a very advanced stage, spent months in a wheel chair, now I am better than ever.
Believe my dear, you will beat this, it is just a bad patch :slight_smile:
You are in my prayers

1 Like
#13

HI Heidi. I’m Lulu and I’m in the UK. I just wanted to give you a very warm welcome and let you know we’re all here to support you whenever you may need it. We rely on each other and are rarely disappointed. I wish you all the best with your new grade at school and your AVM treatment. Also all the best for your Mom. You will both be in my thoughts x

#14

At Stanford huh ! So our were a lucky one to have had Dr. Steinberg right ?

#15

@mselaineious1 I have met dr Steinberg but only needed an embolism so Dr Marks who is the founder and head of the dept did it.
Dr Steinberg is the one doing the surgeries for stem cells in the brain so who knows maybe one day he will work on me.