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Welcome, bepositive


#1

@bepositive

Hi there, welcome to Living With Ben’s Friends. How is your sister doing now? And equally importantly, how are you and your family feeling? I can only imagine how hard it is to see your loved one going through horrifying things like this. But out of all this stressful mess, I love the username you chose - “be positive”. It can be really hard for some people, but I’m really glad that you, your sister, and your family can still have faith, be brave, and you are still out here looking for resources for the family. I want to wish you the best luck with everything, and remember that we’ve got your back when you need any encouragement, opinions, suggestions, or just an outlet.

With love,

Christie


#2

Thank you Christie! I really appreciate you reaching out. My sister is doing so well considering this craziness. She’s already starting to walk, with some support, she’s talking more and she’s in rehab. My family is still kind of in shock and we’re also trying to figure out the best treatment plan for the AVM when it’s time for it to be removed. We don’t know what the best treatment plan is and not even sure best place etc.
I don’t know the size, have to find out but it is a frontal lobe AVM.


#3

Hey, @bepositive I think your sister is doing amazingly! How long ago did she have her stroke, yet she is walking?

You also say that her AVM was closed off during her craniotomy, though not removed. It may be she has some surgical clips on it, which may be good enough not to have to revisit it later, I don’t know. There are about three main ways of treating an AVM:

  • Surgery, like she’s already been through. A craniotomy.
  • Embolization, which is to inject glue or coils into the AVM by approaching it through one of her major arteries (no craniotomy) or
  • Radiotherapy. Zapping the remainder of the AVM from the outside to make the AVM self-occlude over a couple of years or three or four.

You’ve certainly been through one of the scariest things but it sounds really positive how she is doing! Really.

Very best wishes

Richard