You have been wonderful in advising me so far so have one more question. I called his cardiologist and left a message asking this and havent heard back yet so thought I'd try one more shot here regarding it ~ His cardiologist called me and sadly wasnt able to say it was fine and the artery goes around the great arteries as he had hoped. He said the CT results were suspicious that it goes between the two great arteries. He is now set up for a Cath the 20th of May. I thought CT scans were pretty good so I'd assume that this means it probably does go between and before they consider major surgery they want one more look to confirm for sure or is the CT scan not as accurate and it still means a good chance in being fine? I am prepared for both, but confused by what he is saying about the CT results. He has been through so much as it is and I know we will get through this too. I am def not one who likes things sugar coated and always like to know all possibilities in front of me and their chances. Just wondering what I should expect from all directions. He didnt mention any restrictions but wondered if there should be til we know for sure ~
TX again!! I know you havent seen him in person or the results themself so hard to say for sure, just trying to be most prepared as best I can til he get a positive dx. I feel in limbo again :(
Typically, CT scans produce extremely high quality images, so I am surprised that your cardiologist thinks that this is only suspicious. As previously mentioned in my other post, I believe that exercise-stress testing (with or without nuclear medicine perfusion scanning) would be more helpful in this case. A cardiac catheterization does not necessarily define the anatomy or the relationships any better than a CT scan performed at a center that does a high volume of these studies. In the end, if the stress test and perfusion studies are normal, he may not need any specific intervention and may be able to be observed. However, if the stress and/or perfusion testing suggest that insufficient blood is getting to the heart muscle, he will likely need to have surgery. The surgery would be a coronary artery bypass, which would be an artery that would connect with the left coronary artery downstream of where it passes between the two arteries.
Again thank you SO much for your posts and help!! My son had his cath yesterday and it did confirm that the left artery arises from the right and goes between the great arteries. The two cardiology docs spoke to me about it and said that it is now important to find out if he is symptomatic becuase it could be catostrophic if so. They have ordered a stress test with echo in 2 weeks. One doc said the hard part is there is very limited data on this as far as those living with this safely. It is either found to late or found when symptoms arise. I cant help but wonder if those that suddenly dropped had symptoms that hind sight were there or if there really werent with symptoms. I am so afraid that if he isnt symptomatic now that I will spend every waking moment worrying and wondering when it could happen and will he survive it :( This is very scary.
Do those who arent symptomatic stay that way and all is fine? Not sure which is worse, symptoms and major surgery or watching and worrying what will happen everytime he is a "kid" and exerts himself or participates in sports if he will be ok. Do you have any thoughts or suggestions or guidance? Have you seen any with this that are fine and treatment wasnt needed? I desperately would love to meet other families for support in this but cant find anyone who shares this, any idea on where I can look? He said his heart was otherwise in great health so that was encouraging. Do you know if this anomaly is found in certain people with certain syndromes or dx's? He has chiari 1, many skeletal anomalies, a pin hole VSD, connective tissue issues but aorta is fine so not the marfan heart issue. His cardiologist said it would be great if one DX covered all his concerns. I agree but dont know what it could possibly be ~
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