I just got a call from my surgeon. They are going to go ahead and schedule my next embolization and try to work with me on a payment plan to continue getting the needed embolizations. My doctor seems optimistic which makes me feel better. He thinks my heart will be okay as long as I am able to continue getting the embolizations. We are hoping my leg will be okay and that I won’t lose function of it.
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This sounds amazing!! I hope the finance works out in a way that’s sensible and manageable 
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I hope so too. I’m grateful to know my heart will be okay with treatment. Very scared about possibly using function of my leg. I don’t think I could cope well with that. But I think my surgeon said something about physical therapy to possibly regain function if that happens. I don’t quite recall but I’ll discuss it with him again when I see him.
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Great news! Your surgeon sounds blessed with common sense and compassion! Take Care, John.
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I’m very lucky to have an awesome surgeon. He’s always very understanding and compassionate. I’m grateful that he always listens to me and doesn’t try to undermine my symptoms or my pain.
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I feel the same about mine. He & his staff are really amazing people. When I got ahold of him here recently, got me in within a week since I was his prior patient.
Thanks to him, I am the way I am today.
Really hope your “stuff” turns out well.
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I’m glad that you are doing well.
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Moonglo… Hi there. Your story reminds me of my surgeries. It’s been 2 years now, I was diagnosed, had 4 embolizations and the AVM on my brain removed all in 4 months. I was traumatized, actually I’m still somewhat traumatized by the pain I endured. Better pain management is key, and only we can advocate for ourselves, by the 3rd embo, I demanded to have pain medication ( Norco) given to me prior to me waking up. Like halfway through the surgery. OMG!!! It was a game changer, I mean it was still extremely painful but at least I wasn’t waiting to regain consciousness up to 2 hours later before they could give me something for the pain. It helped so much that they not only heard me, but listened to me, and made the first few hours more bearable. They make you feel like you’re a druggie asking for an “opioid “ but they are not the one in pain! Good luck!!! Believe me when I say it gets better.
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They increased my pain medication post surgery but only by a small amount in the past. I’m hoping that since I will be going to be adult hospital instead of the children’s hospital that they will be a little more lenient with the pain medication.