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AVM Survivors Network

A Question for you

#1

Hey all, I have a question for you, but a little background first.

I have been confidentially sharing with my therapist some of the discussions we’ve been having where he has come up in the discussions - we’ve been working a lot on coming to grips with the new reality - the new “me.” What I used to do - banking and fundraising for non-profits - involved a lot of local travel, a lot of talking and a lot of things that I just can’t do. So we’re trying to figure out what is important about what I did and what I might be ale to do instead.

So, before I ask the question, I don’t want to hurt anyone’s feelings, so I’d like to ask you to message me privately and then when I get the responses, I’ll share them with the group (with names removed). Make sense?

I call it the “younger me” question - knowing what you know now, (and not looking at actual treatment) what would you have done differently or what would you tell “younger me” if you could talk to yourself say 2 to 4 months after diagnosis?

I’ve been battling this thing for 40 years, and as it finally seems to have bitten me in a way that I’m not going to come all the way back from, it makes me wonder what I would have done differently - or could have done differently or should have done differently…

I value your wisdom, your collective wisdom deeply and I cherish your privacy wholely.

TJ

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#2

I wish I would have had surgery to remove it completely. Then it would be gone period. But I opted for radiation because that is what my doctor at the time recommended. It was large and involved areas on the motor strip and speech areas. But I have been dealing with this monster going over 7 years. It still has blood going through it. It is so frustrating. My children are older now so if surgery were offered to me now, I would definitely take it. As it is not as big as it was. It was a little over 5 cm when first found in 2012.

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