AVM Survivors Network

Tough situations


@elizabethlyla, Yes you’re right; unfortunately our situations quickly define who your true friends are and who were merely acquaintances… it’s disheartening but it’s good to know who really has your back when you need them.


I used to be left handed. 4 years later, I can write like a first grader with my right. Mine was close to yours, in the brainstem. But, mine was a CM (low pressure return side) so it sort of oozed out instead of a burst. Loneliness, I don’t know. I found this site pretty early. And while nobody’s problem is the same, everybody’s got one. I take an antidepressant. I’ve got a lot to keep focused on. And even after all this time, I still get a little better. Mostly more stamina. Thanks for posting, I felt connected to your story. Best wishes.


@JeremyH Your welcome. I’m glad it helped. Best wishes to you too!


@Mike5 Yes! Sadly but assuredly, we find out who our true friends are and who our acquaintances are. However, we can look at the bright side of having the ability to determine who has our back because then you can hang around the friends who care. Thanks for responding to my post! :grinning:


Hey Logan, my AVM is also inoperable, located in my brain, I have lost full use of my left arm/hand I was Left handed so I had to learn all new, I see neurosurgeons they say I shouldn’t be here I feel fear all the time, but me personally I hide it because I don’t want to scare my love ones, I did have a breakdown a couple of months ago when I found out that my AVM is putting pressure on my eye because it’s moving doing something as long as it stayed the same I was ok now I’m not sure
Regards Julie


@Julkbear It’s understandable to be fearful. Your loved ones would probably be able to comfort you if you told them you were full of fear all the time. I find bringing my emotions to my loved ones up to be comforting because the emotions that I have tend to die down. I hope this helps.

With sympathy,


Hi Logan, I can relate to your situation because I was 14 when I had a bleed and 2 brain surgeries. (I’m 59 now.) First I want to tell you how impressed I am with your maturity, intelligence and courage (your 3 best friends.)
Bless your heart for opening up on this forum. Hopefully that will help you do better emotionally than I have. That age, 14, is a tough one.
I was just starting to notice and be noticed by girls. My body and brain were doing the weird confusing gymnastics associated w/ puberty and adolescence. I’ll skip the chapters about the bleed, discovery, ICU, surgeries, meds, discussions and get to the “exciting stuff”.
Now the pain is less intense and I’m out of ICU and my arms and feet are black and blue, head shaved, scar from ear to ear, black eyes… I felt ugly and 14 is not the age you want to feel ugly. Plus I’ve gotten pudgy and lost muscle because I’ve been in the hospital for almost 2 months.
Finally I get home but I’m not allowed to do anything strenuous. I wear a really goofy hat to hide my scar in school. Of course some mean kids would pull it off and I’d get embarrassed and mad. I just “knew” no girl would want to go out with me. Then a little angel named Sherry invited me to her party, the first I ever got invited to. I’m still grateful for that kindness. Then there was a big black boy named Leroy Baily. When the bully pulled my hat off and taunted me, Leroy “pursuaded” him to give up that practice in the future. Those two people, Sherry and Leroy, will always be treasured even though it 45 years since I’ve seen them.
I have lots more to write and experiences to share. I’ll try to only give you advice if you ask for it. I’m happy to share more. Keep up the good work.


OK, so first, I want to tell you how grateful I am for you sharing a little bit of your backstory. It builds my self-esteem to feel trusted. Second, I just want to tell you that I’m moderately intelligent. I’m not that intelligent. If you ever meet me in person, you wouldn’t see me as courageous because I stress over anything that causes me to do hard labor. I’m mature for my age but I’m most likely not more mature than an 18 year-old. However, I would like to thank you for telling me that I’m mature, intelligent, and courageous. That really helps me find my talents. Thank you so much for responding to my post! :grinning:



Hi Logan, You’re welcome. I’ll tell you the next thing I did when I got home after those surgeries. This is something I’m proud of. I bought a set of weights and a bench press for $45 and decided I was going to get rid of my fat and build some muscle. I set it up in the basement, hung a mirror and started on what you call “hard labor”. When I was allowed to I went out for wrestling and made captain the next year. Don’t forget this is in the days of Jack LaLane (google him), no Planet Fitness-type gyms, no girls sports (just field hockey and cheerleading.)
I’m proud because it took some grit and I got lifetime benefit from it. I still value fitness. I do want to give you another compliment. There is a very old-fashioned idea that it is good to be modest and humble. (Yes, it’s true!) I see that quality in you. Keep up the good work.


Hi Elizabeth,

I’m glad you could relate to all my ramblings :relieved: definently had the same experience with this exposing who my real friends are. Realising the power over our mindset and decisions is so empowering aswell. As much as there is so much we can’t control, taking charge of what we can control and recongising life is too short to waste being unhappy.

Lovely hearing from someone else who gets it!



Webster’s dictionary defines courage as: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty
I’d say that every time you leave the house, every doctors appointment and every “weird” symptom that you encounter means that you have courage. It’s the hallmark of surviving this “thing”


We should frame this. I like a lot!