I'm a little confused since you're talking about the bentall, do you have a dialated or annuerysm in your ascending Aorta? I thought you "just" had the dialated Aortic ROOT, but might have missed something. I personaly wouldn't get hung up on the names of the different possible surgeries or even have my mind made up on what procedure YOU would like and choose a surgeon that way. For example, I BELIEVE the Bentall is when you need the valve, root AND a section of the ascending Aorta replaced, so if your ascending is fine you wouldn't need that.
I most likely would talk to a couple surgeons who had alot of experience with Aortas and aortic valves and see what they reccomend for You and WHY. I think it is important and helpful to try and learn as much as you can about whatever your problems are, so that you can have a good conversation with the different surgerons and hopefully be able to ask good follow up questions depending what they say, so you can make the best choices for you as far as where to have the surgery. Others probably disagree, but I personally think most of the heart surgeons, especially if they work in busy centers, probably know and really understand what all the options are as far as what should be replaced or repaired and what should be left alone, than most lay people, even ones that have spent years, not months, reading studies and journels and talking to different surgeons.
I am NOT saying you shouldn't have a say in what options are the best, I think the more you know and understand the better, but in our experience when we've had to make some choices on pretty complex surgeries or even interventions, I try to wait until we've talked to a couple surgeons and Cardiologist (since they see the patients for long term follow up and see how they do with the different surgeries) before I decide what would be best. Hopefully the different surgeons will give the same opinions, which makes it easier to know what is "right",
I think in your case, where you know you need the valve replaced, but not sure what would be the best way to treat the root,
Some of the other things I would want to know are the measurements of the rest of your Aorta and how the root compares to that. Also as an example of how most surgeons, understand the Heart/aorta and how everything relates to each other and choices to be made, probably more than most patients,. The Aortic Root (to ME at least) is a little more confusing than most other parts of the Aorta, where decisions might be a little more cut and dry. The Root isn't just a tube with the coronaries attachted, but made up of quite a few different parts like the aortic annulus, sinus of Valsalva, sinotubular junction etc. So how depending which parts were affected, probably plays a big role in how the different surgeons would want to treat it or repair or replace it.
Here's an interesting PDF discussing the root http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1729505/pdf/v084p00670.pdf
So I try to understand the basics about the different interventions or surgeries justin will need, so i can carry on good conversations with the medical people, but I try to have an open mind going into talking to the various surgeons we decide to get opinions from, especially as Justin's surgeries get more complex, chances are they have thought about or taken into considerations things I didn't consider.
I personally believe the biggest or most important decision we make is choosing what surgeon we trust that when he is actually in there and sees everything they will make the best choice and do the surgery with great skill. I also believe the rest of the staff is very important, so when you are recovering we know "they've been there done that" and can quickly make good choices if bumps come up.
Good luck, you are doing the best things you can, trying to learn from others experiences.
Have you contacted the surgeons/center you want to get other opinions from and found out what they need to give opinions?
I most likely would talk to a couple surgeons who had alot of experience with Aortas and aortic valves and see what they reccomend for You and WHY. I think it is important and helpful to try and learn as much as you can about whatever your problems are, so that you can have a good conversation with the different surgerons and hopefully be able to ask good follow up questions depending what they say, so you can make the best choices for you as far as where to have the surgery. Others probably disagree, but I personally think most of the heart surgeons, especially if they work in busy centers, probably know and really understand what all the options are as far as what should be replaced or repaired and what should be left alone, than most lay people, even ones that have spent years, not months, reading studies and journels and talking to different surgeons.
I am NOT saying you shouldn't have a say in what options are the best, I think the more you know and understand the better, but in our experience when we've had to make some choices on pretty complex surgeries or even interventions, I try to wait until we've talked to a couple surgeons and Cardiologist (since they see the patients for long term follow up and see how they do with the different surgeries) before I decide what would be best. Hopefully the different surgeons will give the same opinions, which makes it easier to know what is "right",
I think in your case, where you know you need the valve replaced, but not sure what would be the best way to treat the root,
Some of the other things I would want to know are the measurements of the rest of your Aorta and how the root compares to that. Also as an example of how most surgeons, understand the Heart/aorta and how everything relates to each other and choices to be made, probably more than most patients,. The Aortic Root (to ME at least) is a little more confusing than most other parts of the Aorta, where decisions might be a little more cut and dry. The Root isn't just a tube with the coronaries attachted, but made up of quite a few different parts like the aortic annulus, sinus of Valsalva, sinotubular junction etc. So how depending which parts were affected, probably plays a big role in how the different surgeons would want to treat it or repair or replace it.
Here's an interesting PDF discussing the root http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1729505/pdf/v084p00670.pdf
So I try to understand the basics about the different interventions or surgeries justin will need, so i can carry on good conversations with the medical people, but I try to have an open mind going into talking to the various surgeons we decide to get opinions from, especially as Justin's surgeries get more complex, chances are they have thought about or taken into considerations things I didn't consider.
I personally believe the biggest or most important decision we make is choosing what surgeon we trust that when he is actually in there and sees everything they will make the best choice and do the surgery with great skill. I also believe the rest of the staff is very important, so when you are recovering we know "they've been there done that" and can quickly make good choices if bumps come up.
Good luck, you are doing the best things you can, trying to learn from others experiences.
Have you contacted the surgeons/center you want to get other opinions from and found out what they need to give opinions?
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