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AVM Survivors Network

Long time AVM survivor

Hi!
I’m a 22 year survivor. I had my AVM remover in 1997. To this day I still have some difficulties. I have pushed through but some days I get so tired of fighting. No one understands because I seemingly have a very normal life and it gets lonely. Are there any other survivors out there who feel like me?
I’m so lucky because I have this beautiful little daughter but I’m so worried that some day when she finds out her mom has struggled so bad that she’ll think I’m broken. Thanks for listening.

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Hey aruski,
I don’t have an AVM but my first neurosurgery was back in '96, since then Ive been on a bit of a rollercoaster of symptoms, medical denial to medical acceptance of a continuing issue to more surgery, more surgery and even more surgery.

‘A very normal life’ ??? What’s that??? This reality can be VERY isolating. I’m often saying "It would have been easier if I’d lost a limb, people would be able to see the issue, rather than be questioning "

And I have to tell you, Mom’s not broken, Mom is extremely strong to be able to struggle through. I know of many people who haven’t been strong and their battles have been minimal in comparison. Mom is strong, not broken. Mom has fought. Mom has shown determination to continue. Mom could have given up, but she didn’t.
These are positive qualities that any parent would want their child to have. You have lead by example, not just in words.

Merl from the Moderator Support Team

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Thank you! I so needed the encouragement today! When this first happened to me I used to say the same thing about limbs! Just because our disabilities aren’t visible doesn’t mean we’re invisible.

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No how you feel. Had my AVM rupture back in 2000. Ended up having 4 surgeries. I’m in great physical health and look like you’re average person but still have my struggles with multitasking. Short term memory is a problem I will always have to deal with. Take notes on my phone and at work if multitasking just ask for my boss to text me so I can mark of what I’ve done. It’s always great to share our stories with others.

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It’s only two months since my craniotomy and I can make myself look like an average person by hiding my scar. My friends seem to have already forgotten I had brain surgery; they don’t understand my issues with noise, memory or getting overwhelmed despite my explanations. I am so frustrated by friends asking me “Why are you tired?”. I really want to scream back at them “duh because I just had brain surgery”. But I smile sweetly and tell them that this is normal for people who have just had brain surgery. And then they ask me “Have the doctors checked your iron levels?”. Are they even listening to me??? ((Rant over)).
Yes it gets lonely, so you are not alone in your loneliness.

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I can totally relate. If they can’t see it, then you must be fine. Plus, everyone is an expert. I’ve started saying “ thanks Dr “ when they give me advice, but they still don’t seem to get it. It really is best to just ignore them and move on

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Just to chime in, I’m 37, had my first bleed in spring of 2000. Then had my second bleed in summer of 2000, then my 3rd bleed in spring of 2010. I’ve had to relearn how to walk, talk, read, and write. But in the midst I’ve met this wonderful family! Also, I met the love of my life post injury and we have children now! If I had it to do all over again, the only thing I would change is the time I spent on things that didn’t matter. Chasing the 6 figure dream house or driving that sports car (I can’t even drive now) was pointless.

This life is a gift. IMHO, we are each given it to use in our own context to be a blessing to others. Not that life is about pleasing others, but rather living outside of just yourself and your own interests. Not preaching, just revealing my modus for the encouragement hopefully of someone else who is low. You’ve found a great group of people who are trying to figure out how to cope with something that was no fault of their own. I hope my epitaph will be, “he was here for a time, so that others could see the difference.”

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Wow! You all are so inspiring. I really have come to the right place. I think you have all captured the sentiment in one way or another. I hate when people say, “could be worse,” or “at least you’re alive and can function.” Yes, but no one has any idea what we go through on a daily basis. The worst is when the people around you basically tell you to “suck it up.” I do and I have for 22 years!! Some days are harder than others

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I very much relate to this; AVM removed a bit over a year ago, went back to work a few months after surgery. Everything ‘looks’ normal, but many days I feel anything but: I get seizures, my left arm goes numb often, the medication Im taking causes insomnia, and I struggle with depression/exhaustion and extreme dizziness daily. It sucks. I think your daughter will admire, respect, and love that you’ve continued to strive, in the face of some very real challenges. Good luck, I’m definitely there w you!

Awesome, thanks for writing that out.