We are all in this struggle together. When we cry, when we feel lost, when we feel mad or exhausted, it is never alone. The same is for the good times, we share our positive thoughts and energy, our accomplishments however big or small. As you focus on the small positives and accomplishments that keep you going they will build up.
Some days I feel so exhausted and life wears on me but then I look at my beautiful cat sleeping beside me so content with the world and I smile. Sometimes just getting out of bed to shower and eat is an accomplishment. Sometimes I am so drowsy What keeps me from giving up on my worst days are focusing on the small pleasures in life and remembering to be kind to myself.
As much as our AVMs can bring out our weakness and give us our hardest life challenges - I think this community really shows, it also brings out the beauty in our humanity. Something about being brought to a point of being so very vulnerable and fragile, you realise what life is really about - spreading love to one another, doing what you can instead of dwelling on what you can’t, enjoying and appreciating the little things you once took for granted and reaching out to one another and building meaningful connections like we do on here. Even when we feel our weakest, really, from an outsiders point of view - damn we are strong!
Hi chingona! I’m new to this website. My aunt found it this morning and recommended it.i am suffering from a left brain AVM that’s large (2x4cm). I went to the University of Kansas medical center after being referred from my neurologist. This was 4weeks ago so it has been a whirlwind of emotions. Before, I knew something was wrong. Something had to be. I had trouble with moving the right side of my body. A bit of history: I suffered from an eating disorder in my teenage years and am still struggling with being balanced. This AVM is obviously not a cause of my eating disorder but it could attribute to it. Anyway, I had my MRI a week before Christmas. This year, though, was so full of family and I had nothing to show other than thankfulness. I am rather young, 21, but I know I’m not the only one after finding this website. It’s wobderful to have a community that is knowledgeable about my condition.
I also had a right frontal lobe AVM that bled 11 years ago. Often I find that there are triggers that cause me to be more emotional. For example, the change of routine brought on by the holidays has left me feeling overwhelmed and exhausted, which in turn has made me more emotional. I try to just surround myself with the things that make me happy; usually my pets, family, and my favourite books.
Hi Lilly, and welcome to the site. It would be great if you started a forum under new member introductions, but I’ll leave that up to you to decide if you choose. It is a really good way to get introduced to folks here. Its great you are here, a lot of experience here and most of us had never heard of an AVM until either us or a loved one was diagnosed. I have an AVM in my left temporal that as gamma knifed 14 months ago.
Great, I will do that’s Tell me a little more about gamma knife, please. I was thinking of undergoing that but I am traveling to multiple places to check out the proton beam as well. This is all VERY new to me so I’m unfamiliar with all of the treatment options.
Gamma Knife delivers a high dose of ionizing radiation emanating from 201 cobalt-60 sources. Its used to treat a variety of conditions, one being AVM’s. I ended up in the hospital with a rupture and underwent a battery of tests, which I have very little recollection. I did recover, mostly, and over a period of 6 months and more tests determined gamma knife was my best option due to location being fairly deep. It came down to craniotomy or gamma knife and the neuro surgeons recommendation was gamma, which really made my decision easy. I went in early in the morning, had the frame mounted, had a CT scan, an MRI, they used my angio results from three months prior. Then I had the actual gamma knife procedure, it took 24 minutes,. Then had the frame removed. The only uncomfortable piece was the mounting of the frame to the head, but wasn’t bad. I’ve had one dose and go back for another MRI in another 10 months. Thy estimate for mine one to two years has a 95 % chance of obliteration.
That’s a good point, I have noticed that I have a harder time if I’m out and about, over stimulated, especially going to the “big city” But I also get SOOO BORED at home all day. I’m a very active person, and when I’m not active I’m miserable. I’m very lucky and grateful to not be working right now, but I miss it so much and I hate being broke.
Hi Lilly!
Welcome to the group! wow you’ve definitely had a shocking experience. So I’m curious about your symptoms that lead doctors to your AVM discovery. I also wanted to say that because of periods of my childhood and adulthood I experienced hunger and homelessness I have some issues with food. It’s honestly a little embarrassing to say and admit, but I feel like this is a safe place to be real.
Maybe try giving yourself a more scheduled activity routine. That way, yes, you will be going out and about still, but I find it easier to cope with change if I know it is coming, or if it is part of my day-to-day activities.
Hi Chingona: Welcome to the AVM Survivor’s Network. We are a support group that understands some, if not all the changes and challenges you are going through. Does it get better? I would say yes. When does it get better? It’s different for everybody. Just trust and believe you will get better.There is no time-line for healing. My AVM is in my Cerebellum and it ruptured in Nov., 2013. After Gamma Knife Radiation, I still have times of Brain fog, raw emotions, lack of concentration, fatigue, loss of balance & coordination, and the inability to express myself are still problems I have from time to time. In time you will come to accept your limitations and as your Brain continues to heal and the dots begin to reconnect (so-to-speak) you will better cope with the new you. It may not be pretty, but you are still here with your limitations and with support & encouragement from this wonderful group. Don’t hesitate to discuss your concerns with your doctor(s). My recipe for dealing with the monster in my head is P&P (Prayer & Patience). I wish you the very best on your AVM journey.
