So first let me introduce myself. My name is Peter Lobo and I live in Toronto (GO RAPTORS!) as a 20 year old in school with an inoperable AVM in the right side of my brain. I discovered it due to a seizure when I was 15 (I’ve been blessed to not have anymore seizures), and I get migraines around once a month, except when I’m really stressed when I get them around once or twice a week.
Though I have been a member on this forum for awhile, I’ve strayed away from utilizing it, because honestly, it scares me to read up on what awaits me. I’ve not had a single bleed, nor has my AVM ruptured, which I am very grateful for, and reading up on these things and the impacts they have is something I would just like to imagine won’t effect me. A very silly ideology, I know, but it helps me sleep at night.
Regardless, as I’m getting older and more concerned of when or how a bleed or rupture will affect me, I feel it’s time I stop being so scared and I hope to be a bit more active on this site.
My question for today is, what do you use as outlets besides this website (has this website really helped you alot?)? I feel like I can’t talk about my condition with anyone. I never like bringing it up with my girlfriend of two years because she cries easily when it comes to this stuff, and I feel like all my friends say the same thing to me. like “I’m sorry, can I do anything, how can I help?” the rare “Man that sucks, that’s life” which used to be a refreshing statement away from the norm, no longer is very relieving for me.
I hope this website and forum becomes a great outlet for me, and I hope I can give my own personal experiences and feedback to help some of you. But in case it’s not, what else do you guys use as outlets?
Hi Peter, welcome!
I see that you are in Toronto… you should be able to contact BIST (Brain Injury Services Toronto) and/or OBIA (Ontario Brain Injury Association). They can connect you with different outlets, such as peer mentoring, or different conferences. Hope this helps?
From, Julia
Welcome Peter! This site has been incredible for me, supportive and realistic, with such a range of experience in all things AVM. This is from all aboard and caregivers here provide a fantastic perspective as well, and we can help them with the way it is for those who have or had AVMs. My outlets have been here, my family listens pretty well. The biggest one for me is that I’m fortunate to be healthy enough to exercise, which is my saving grace. I did prior to my bleed and during recovery changed how I do it but still needed. Daily. I had many days where it was a struggle to find the energy to go for a walk, but it always helped me. I think mostly from the mental health side of things. Another thing I dabble with and need to get more focused is mindful meditation, just to relax the mind. I’m fortunate in that when I exercise I put my music on and basically thoughts and worries disappear. Coupled with the meditation, I have found a level of success, always looking for more and very aware I may reach a point to change or add something to maintain the equilibrium.
I love this topic and can’t wait to see others input. Thanks and its great you’re here with us!
This group understands what is going on in my head better than my wonderful wife and my kids. They try, but it just doesn’t happen.
I am now at 41 years since I was diagnosed and I haven’t had a rupture. My treatment last year was to prevent a big risk of a brain bleed - and I swapped it out for some much less severe problems - headaches, hearing, paralyzed vocal cord…
What are my outlets? I write - some of it is just for me, some of it is for me and my wife, some of it for me and my therapist, some of it for my personal website and some of it for here (and other places too). I am trying to figure out what else but so far with two relatively high needs teenagers still at home and a wife who works full time, playing Mr. Mom takes up a lot of my limited energy.
I expect that once Social Security gets straightened out and once we “plateau” with the medical procedures, I expect I will be dealing with that question a bit more.
Hi. Everyone has said quite a bit, so I’ve not much to add. However…
I agree with you about reading on this site. When I first arrived, somewhat scared by my new diagnosis, I found encouragement and fear of what might happen in almost equal measure, so I resolved to be careful how often I visited or read. I think we have to be positive about life and so you have to manage how much of the more difficult stuff you read. For the moment, I’ve had an embolisation and everything seems ok but I might be back in your less sure position again one day. Meanwhile, I’m resolved to do with life what I can, the best I can.
You’re always welcome here when you need people to talk to, and many will say only AVMers understand AVMers, but I think it is good to be able to find people you can talk to. I have a number of great friends who I see in the pub on a monthly basis these days (as younger, single folk we used to go every week) and perhaps because we are now older and have each gone through more of life’s challenges, they are a good bunch for listening and being supportive. I’m not sure anyone else can help exactly, other than just “be there”, listen, understand.
Often, while people have no experience of our condition, they may have friends or relatives who have had surgery or have had a stroke. I can think of one or two people I spoke to who had had a stroke and gone through surgery when I was learning about my AVM who were really helpful to talk to. I remember one of the guys at work had had a sub arachnoid haemorrhage with no prior warning and had passed out immediately. He came out of a coma a couple of weeks after his surgery to find out what had happened. When I described our predicament to him, he preferred that he had simply blacked out and found out about it all afterwards. The anticipation of a stroke is quite tough, so pat yourself on the back you’re cutting it just fine.
Keep talking to your friends. They’re pretty young, like you, at the moment but they’ll learn more about life and support you better when you get to the point of need. A lot of support is about good mental health. As John says, having space, being able to get out and do a bit of exercise is a good thing for him. Whatever you need to help you stay OK is a good thing to remember to do.
Hope some of this rambling helps. And this is me with not much left to say? Oh gosh.
Thank you, everyone, for such a warm welcome and some amazing advice. It makes me feel a lot better about this site and about feeling alone in this. I hope I can come to know you all better and become a more active member here.
that is the benefit of this site…only,people here can truly telate to what having an avm is like and it is a great outlet. but as hard as it is we have to move forward with our lives the best that we can and find something that gives us a purpose without dwelling on the what ifs or the why me…
That is a bit of a trick when you have to explain your story to your friends. I always get asked to tell my story at a church camp I work at during the summer. I mostly tell the funny moments in the hospital. That gives the kids a laugh.
My symptoms have gotten quite complex and as I’m 19 months out and really no change in the last 12 months, I’ve taken to telling people "ArterioVenous Malformation - if you want to know more about it, Google AVM. And then move on to the voice, the tremors, the hearing - those things they can usually relate at least some. I wonder how many actually do google it.
Hi Peter, welcome! I’m just seeing your post, so I am quite late with my welcome.
This website has been one of my outlets and a great support for when I was in my beginning recovery stages. Getting into artwork was also a means of therapy. Nowadays, writing poetry is my outlet and my voice.
I wish you well in your journey. Hopefully everything is going well for you after those three months.
