Brain AVM Rupture - April 2021

General
44

I actually cried reading some of these comments i have an unruptured avm in my brain and have felt the worst lonliness im in mid decision whether to have it treated any advice would help

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45

Hi Lisa,

We are glad that you could find our group, though in unfortunate circumstances. There are many members here that would love to help and offer their support. If you would like to let us know more about your unruptured AVM and your circumstances we could find members with similar cases that can provide advice.

Feel free to lean on all of us. You are not alone in this!

Andrew

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46

Hi @lisajane and others. As a person who has had now 3 ruptures, a stroke, and a host of other procedures I can say at least in my case, it makes for an interesting life. But I will say if I never had a brain bleed I never would haveā€¦

  1. Written a book ā€œMalformation: when bad things happen to the right kind of peopleā€ (www.mymalformation.com)
  2. Married the most wonderful, beautiful woman in the world, Leslie McMonagle
  3. Finished my MDiv and Eds so that I could be properly equipped for the journey ahead.
  4. Had the opportunity to meet and help so many who are quite literally without hope.

All that to say, I hope you have a happy, jolly, wonderful, and warm holiday season.

Blessings as you continue, grace & peace as you go!

paul mcmonagle

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47

Fantastic news that you have had some treatment. I had that pounding head feeling but get advice if it doesnā€™t go away. My scar is visible on the back of my head and i wish i had got advice on how to manage it. Thereā€™s so much more that can be done these days to make it less obvious. 30 years later it still van be painful.
Will the titaniun in your head trigger airport alarms when you are fit to travel again?
Are you getting the right support at school too?

Best wishes
Tim

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48

@Lisajane
Hi
I donā€™t know any of your background but i had an unknown Avm which ruptured and put me in hospital for a year. If i had known I would have taken treatment first because I hated living in a hospital.

Best wishes
Tim

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49

The titanium is luckily small enough to only be detected by a hand-held metal detector, but if they tried hard enough Iā€™m sure they could find the screws.

At school, Iā€™m in general education classes, US Government, English 12, and Sociology, then Iā€™m in 3 different (school) choirs, and theater tech. No real accommodations so far. It sucks, but whatcha gonna do?

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50

Hi Lisa, Sorry youā€™re going through the avm suffering. Itā€™s a tough, one as everyone here can attest to. Donā€™t worry, I wonā€™t give you the Britā€™s ā€œkeep a stiff upper lip,ā€ advice about that. (For the loneliness on the other hand, thatā€™s a good strategy.)
Once you have all the info you can get thereā€™s probably no single ā€œrightā€ answer.
Based on your age (physical/mental resilience), Iā€™d say push yourself as far as you can now.
Get as much testing/treatment as you can take even though it feels like youā€™re risking unnecessary pain. Everything to do with avms entails risk/pain. Keep us posted. Greg

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51

Hi greg its been a whole year since i wrote these first notes and i just thought id give a little update i eventually came to a descision to have a craniotomy im now 5 weeks after op and am doing well this morning was the first time since the op where id woke up with out a head ache which is great im now just waiting for my follow up to hopefully say im in the all clear :pray:

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