I was talking to a good friend today about the conversation I had with one of the neurosurgeons in NY who called earlier. He couldn't believe about yesterday. He said the thoracic outlet surgery has to be done, but that if the cardiothoracic doctor said he wouldn't do it wouldn't of the Ehlers-Danlos, then maybe he was doing us a favor and we'll just find someone else.
He emphasized that leaving this alone is completely not an option. He said the two of them that I saw the last NY visit were "impressed" with the symptoms I had from it. (All they told me then was they were sure I had it and I needed to call a surgeon when I got home; if I knew the extent then I wouldn't have put it off for 2 months.) Hee said leaving this untreated is serious enough that it alters the vascular, arterial, and the neurological system. He said it's the first thing that needs taken care of right now. I didn't expect that.
Tuesday, October 2, 2007
One NY update
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Oh Keesha,
ReplyDeleteI'm sorry to hear the latest hurdle turned out to be so urgent and scary. Keep us updated on the Baltimore guy's schedule. Know you have lots of folks out here sending you prayers and good vibes.
You are my hero. I hope you know that you have shown me strength and compassion that no one has ever shown me before.
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