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wishing4agirl's picture
Joined: 09/11/03
Posts: 917
Long Time No Post

Hi everyone. So sorry this board has died off quite a bit. I wanted to come check in for those still around though. I don't think I ever came back to update after we saw the doctor about his MRA results. Well the dr was a complete idiot and I will leave it at that. However, I did go see my dad's vascular dr this summer with Eli. I LOVE that dr. And that should tell you something because the word's love and dr never belong in the same sentence in my world. So we are left with Eli having a massive blood clot in his left vertebral artery (major artery that goes to your brain) and he still has blood flow issues. Thankfully he is no longer passing out and having TIA's. The dr we saw this summer doesn't get why no one is following him for this issue. He is too far away to see on a regular basis and he's a surgeon and right now we don't need surgery but he believes he should be followed. However, he helped me come up with a plan and feel confident in what I am doing in the meantime. He told me what to look for in a dr while we search. So that is where we are at. We are trying to make an appt with the Neuro we saw who helped us get the official "it's the subclavian steal syndrome" that's causing the issue. She's the closest one I'm going to trust for now. We will see where it takes us. She had apparently wanted a repeat multi-day VEEG, but I don't think it's necessary at this time. Hope everyone is well.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

Same here. Haven't posted in ages.
Good to read your update. Having your Dad's doctor take you seriously makes a huge difference. Sometimes we think we are going crazy without support.