Meeting Dr. Singer

Zachary and I went to our appointment with Dr. Singer and Dr. Jordan joined us, thank Heaven’s, cause Dr. Singer was talking way over my head. Some of the stuff he was saying I only understood because I did my research, lol. Thank goodness for Dr. Jordan and her ability to bring things down to a level I could understand. We are going ahead with the Angiogram, it has a 50% success rate, pretty risky, but we really want to find this “leak” I'm assured that there is another test that can be done if this one is unsuccessful. I can not remember the name of it tho ... I will have to ask Dr. Jordan about it when I see her again. I also forgot to ask her about the neurodegenerative condition. I wanted to know if the condition (the way he walks, the stiffness in his back) that Zachary is currently in right now ... is it reversible? Dr. Jordan also mentioned that a study was done from 19?? to 2006 of SS and there were only 200 known cases that had any literature written on them. She also mentioned N. Kumar I can’t remember if he did this study or if he was the one that wrote several articles on SS

Names to remember and research: Michael Levy, Rafael Llinas, and N. Kumar

Questions for Dr. Jordan

You mentioned another test that could be done if the angiogram is unsuccessful what was it again? CT Milogram

I read that SS is a neurodegenerative condition. Is Zachary’s immobility part of this degenerative condition? I mean is the way that Zachary walks and the stiffness in his back reversible? Or is this the degenerative that they are talking about? Will this get worse? These are very good questions, and to be honest I can only say I don't know, there aren't any other cases that we can base Zachary's case on, we are hopeful that the leak will be found and Zachary will regain his mobility, but we aren't able to say what his prognosis will be.