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Superficial siderosis

My husband was diagnosed with a very rare condition called Superficial Siderosis. From 1908 till 2006 there were only 270 cases reported worldwide and still aren't many more. Only one Dr. in the world is doing a clinical trail with a medication, that trail is in phase two and will not be over until 2014. It is a progressive degenerative condition, which was caused from a fall 20 years ago. We just found out this year he has a tear in his dura which has been slowly leaking for the past 20 years and is now causing some major health problems. We are fortunate that they were able to locate the bleed thru a Dynamic CT Myelogram as it was a 1 in 4 chance. The fluid collection which is in the front of the T10 would need to be permanently closed with stitches and water tight to stop the progression of this condition. It would not reverse his current symptoms (80 percent hearing loss in each ear, balance and bowel issues) from getting any worse along with other terrible symptoms if it continues to bleed. We need to find a really good thoracic surgeon. We have meet with one surgeon and he has done very few thoracic surgeries, so I would like to get a second opinion. He also mentioned my husbands tear is in the front and in a difficult place and would have to remove some of his rib. I have been researching but could use any input. Thank You in advance.
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