I thought you might like an update since I?ve been talking about the little guy for a good five years here. 
This year after seeing our cardio and having an MRI done, we decided to get a second opinion from a cardio in Ft. Collins. He seen a cardio and then a surgeon too. They were of the opinion that the valve WILL fail in time, so we may as well wait until the aneurysm is closer to 5 before operating ... then replace the valve at the same time.
I told my cardio all this at my annual appt. a couple days ago. He told me that is exactly what he would expect to hear from a doctor who wasn?t familiar with Marfan?s. He said that there is ?extra? tissue in the heart of a Marfan?s patient. He explained to me how you could remove this extra tissue and not damage the valve if you were a good enough (experienced in Marfan?s) doctor. He explained how with Ryan?s condition if you did the surgery now before the valve was impacted or the dissection bigger you would not have to lose the valve. And avoid the evil RAT POISON..... that?s worth a lot to me.
My cardio recommended sending Ry to either Dr. Cosgrove or Dr. Bruce Little at Cleveland clinic. I?m also looking at Dr. Joesph Coselli who is a ?professional advisor? to the Marfan?s Foundation. We decided we?d research them like crazy until Monday and make an appointment with one of them at that time. I?m hoping we can just send a few of the tests we?ve had done, and not have to send Ryan. He?ll be in finals week before long and also has a engineering internship that would get messed up if he left. That should work, shouldn?t it?? You think they need to have him there in person?? I didn?t think about just sending the tests until after I left my cardio, so I didn?t ask him about that. Is that something people do??
This year after seeing our cardio and having an MRI done, we decided to get a second opinion from a cardio in Ft. Collins. He seen a cardio and then a surgeon too. They were of the opinion that the valve WILL fail in time, so we may as well wait until the aneurysm is closer to 5 before operating ... then replace the valve at the same time.
I told my cardio all this at my annual appt. a couple days ago. He told me that is exactly what he would expect to hear from a doctor who wasn?t familiar with Marfan?s. He said that there is ?extra? tissue in the heart of a Marfan?s patient. He explained to me how you could remove this extra tissue and not damage the valve if you were a good enough (experienced in Marfan?s) doctor. He explained how with Ryan?s condition if you did the surgery now before the valve was impacted or the dissection bigger you would not have to lose the valve. And avoid the evil RAT POISON..... that?s worth a lot to me.
My cardio recommended sending Ry to either Dr. Cosgrove or Dr. Bruce Little at Cleveland clinic. I?m also looking at Dr. Joesph Coselli who is a ?professional advisor? to the Marfan?s Foundation. We decided we?d research them like crazy until Monday and make an appointment with one of them at that time. I?m hoping we can just send a few of the tests we?ve had done, and not have to send Ryan. He?ll be in finals week before long and also has a engineering internship that would get messed up if he left. That should work, shouldn?t it?? You think they need to have him there in person?? I didn?t think about just sending the tests until after I left my cardio, so I didn?t ask him about that. Is that something people do??
