Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Hi all, Im sorry i didnt update yesterday, I just didnt feel like it... The appt went as i thought it would, I have been researching soo much that i kinda had an idea as to what would be said. It did help with the questions I had to ask to know a little about it beforehand. Basically its a sit and wait game... aortic root is dialated to 26mm. These do not change over night so his next echo will be in Nov ( one year apart) It is felt that has a connective tissue disorder that has affected his heart, the two main one mentioned are Marfans Syndrome and Elhers Danlos Syndrome. His dialation might not change, or might change slowly, or quickly, we just dont know. if and when it reaches 50mm he will need heart surgery. As the root dialates it gets weaker and weaker, it is felt that surgery done at this point is most benefical to avoid rupture which would kill him. will likely need beta blockers if it does continue to dialate in the future to keep his blood pressure low ( less pressure on the " weak spot " ). At this time hes not to play any contact sports ( hockey, football, wrestling, weight lifting etc) but he did say Nick can play soccer this summer. Nick is finally feeling good from the remicade that hes ready to give sports another try. It was also recommended that the rest of my boys get echos done, this is genetic and they all have a chance of having what is dealing with. So thats it in a nutshell, not the greatest news, but im the kind of person that needs black and white answers, these i can deal with, its the grey areas that I can't. hugs Helen and ( systemic ) Quote Link to comment Share on other sites More sharing options...
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