Hello, my name is Heidi. The first time I used this website I was 10 years old. I am now 15. Logging back in and reading everything I wrote all those years ago, it felt like all the memories have flooded back from when I was first diagnosed. Now, I was only 10 so I didnt completely understand what was going on, what certain procedures meant, and how lucky I am to be alive. Now that I am older I realize how lucky I am to have received my treatments, and that I am still benefiting from them today. Some background info, I was having an allergic reaction to a medication, but before we knew this I did an MRI. I remember so vividly my mom opening her phone across from me at the dinner table and suddenly gasping before turning to my grandmother and saying ´´Oh my god, somethings wrong with Heidi.´´ Life after that was a blur. I couldn´t completely grasp the idea of what my condition was until I was much older. My avm was massive and was located on the left side of my brain, deep, extremely deep. So deep the only treatment plan I would benefit from was Gamma Knife radiation. So, over the course of 5 years, I received many angiograms, MRIs, and eventually radiation. After the radiation, my doctors kept telling me my AVM was getting smaller and smaller, and I was content. Until this past month. I went in for another angio to see if the size decreased again, but when I woke up from surgery, I overhead my surgeon and grandmother talking outside. ´´More radiation?´´ ´´Will she face memory loss?´´ ´´Is this really best for her?´´ I knew what this meant. It wasnt gone. Its not shrinking anymore. It felt like my AVM journey was a boat, and the waters were calm for years, but now the waves are crashing against my boat and I´m sinking. I just wanted this to be over. Gone. Destroyed. I recently had my appointment with my radiologist, and in the midst of discussing treating my AVM with radiation again, I felt like someone had tapped me on the shoulder saying ´´Its ok, this is whats next, lets accept it and hope for the best.´´ I am set for radiation again this summer. To those reading who feel alone or are struggling, know that it gets better, no matter how bad it seems. May god be with you all, and thank you for reading my story. Hopefully I can come back this summer with good news.
It’s great to hear from you again and I love your resilience.
Do feel free to talk to us about anything that’s going on and hopefully we can help you a little along the way. I’d hope you can talk to your grandma about any of your worries and that she feels ok about talking to you as well. I think both of you have gone through an incredible amount.
Did you lose your mum? (This is why I’m thinking you’ve both gone through an incredible amount.)
Very best wishes,
Welcome back Heidi! I remember when you first came to our forum, you were so articulate for your age. That trait remains! Our journeys are certainly never a straight line, and it sounds like you have processed what you are facing and are at peace with it. That is a good place to be whenever faced wth adversity, difficult decisions and decisions where it is impossible to have all the answers.
Take Care, and don’t be shy about reaching out to us here.
Thank you very much! And yes, my mother passed away two summers ago. She was my rock during this process and wanted what was best for me. Now that I’m battling this without her, I can truly sit back and realize how much she helped me over the years. Thanks for the warm welcome back!
Thank you very much!
I’m very sorry to learn that you lost your mum. And I can’t imagine how your grandma feels if she has already lost her daughter and you are going through more challenging times: she might find it more difficult to talk to you about what’s going on with you: but I hope you can talk openly, constructively with her and I hope she understands the strength you have.
I hope things go well. I’d love you to keep us in the conversation and like I said, if there’s anything we can help work through, do talk to us about that.
Very best wishes,
Hi Heidi! So sorry for your loss, I know what it feels to loose a mom, it’s like a part of you is gone with her((( I beleive she still helps you to go though everything from heaven, she is your angel! I wish you the best of luck !
Very very best wishes,