The web is filled with all kinds of information on Superficial Siderosis, and reality is slowly slapping me in the face. I was told by Dr. Jordan to research or look up information on Michael Levy, Rafael Llinas and N. Kumar. I have been studying and have found that the success rate in finding the leak isn't very high at all, however, we will continue to hope and pray that Z will be one of however many to have a success story.
So, as I went to research the Meylogram and what other procedures are out there that would help to find the leak I came across a support group on the web. I'm pretty careful about the kind of information I gather and this seems to be a very good way to get some accurate information. Dr. Levy's name is mentioned quiet a bit, and already there are a lot of questions being answered. I think the saddest part of all of this is that Z will most likely have I long trying relationship with SS. The statics aren't very promising when it comes to finding the leak ... and the prognosis? Yeah, nothing promising there either.
I am in contact with the person who heads up the support group. Can I just say? Wow!! He has ton's of information, it's like I've hit an information gold mine. There is so ... much that this disorder/disease can do and none of it is good. It's all really quiet depressing and it can bring you down, but with great faith I stand tall for my son and will continue to do so.
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