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priley

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Well, I'm new here but it appears I may need a valve replacement. 30 years or so ago I was told I had a bicuspid valve instead of a tricuspid valve. They said it was fine then but may leak later on in life. Well it's later on in life now. I don't have any symptoms yet. I am on blood pressure meds and I got light headed and my blood pressure was low so the Dr dropped my dosage and it seemed all was well but she wanted me to get an echo just to rule out anything. Well it showed the bicuspid valve with severe stenosis. I'm going to get an MRI then will talk to the valve surgeon. I will talk to them but I'm pretty sure I don't want this done at the local hospital. I live in WV about 1:15 from Johns Hopkins. Cleveland looks to be a 5 hour trip. I'm trying to research Dr's and Hospitals and the quaintly of procedures they do. Not having much luck in that search. Any help I could get would be appreciated.
I've never been sick or been cut on except tonsils when I was a little kid. I own a steel construction company, a restaurant and a farm. I'm not looking forward to a surgery that's gonna put me on my back but I guess it will be what it is. I'm hoping to talk about the robotic surgery instead of the wide open method with the surgeon. Glad there is a forum here to talk about this.
 

pellicle

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Hey there ... personally I feel that being alive is better than being dead, but you may argue the point on that.

I've had three goes at skipping out on being dead just yet.

I'm hoping to talk about the robotic surgery instead of the wide open method with the surgeon.

I'm not clear on this "robotic surgery" and despite being a great fan of science fiction in books and movies I'm a a big fan of science fact and indeed deeply conservative science fact and long term positive outcomes in my actual life.

So, what can you tell me about this robotic surgery and why its better than the surgery where a surgeon does it with tools (or even "wide open").

I've been "wide open" 3 times in my life, its known as the gold standard and its also known that sometimes it starts as minimal and and ends up being more opened up. I can't talk about technical aspects of surgery because I'm just not qualified.

I understand that there are some slight advantages with respect to sternal healing, and perhaps a bit of time in recovery with the so-called mini sternotomy. Also, is this perhaps the "minimally invasive" surgery?

I don't know your age (mines in my bio) or if you have any aneurysm yet or not.

Either way, welcome aboard and look forward to any discussions.

Best Wishes
 
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MdaPA

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Croooser

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I went to Cleveland, as did several others on here. See my thread for some info.

 

Chuck C

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Welcome to the forum.

And welcome to the club, a club that nobody is excited to be a member of, but we're all sure glad that it's here. I'm a little more than 17 months past my surgery. Like you, I the reason I needed to have my valve replaced was that I had aortic stenosis. This site has been a great help to me and I'm really glad that I found it. It was very reassuring and informative for me to communicate with many others who had gone through the experience of what I was facing.

I'm trying to research Dr's and Hospitals and the quaintly of procedures they do. Not having much luck in that search

There's a couple of different ways to approach this. Here is what I did. US News ranks the top hospitals in the country. As I wanted to go to a top clinic, I started there. I put a link to their website below.

Next I had to decide how far I wanted to travel. As many here know, Cleveland Clinic usually is ranked #1 for valve and heart surgery. I thought about making the trip, but it is across the country. Ultimately, I decided that since I live in California and we have several of the top hospitals in the country, that it made more sense to stay local. UCLA and Cedar Sinai were among the top 5 hospitals for my procedure in the nation and less than a 2 hour drive from my home, so I decided to start with those.

I scheduled consultations with the head of cardio-thoracic surgery for each hospital. I expected the wait for such a consult would be months, but was pleased when I was able to get my appointments within a week of booking.

Before the consult, I also checked out the individual statistics for each of these surgeons. There is a website called SurgeonRatings.org, where you can look up statistics for most procedures. I put the link below. So, I checked out each of these surgeons. I was pleased to see that they had among the highest volume of valve surgeries and also among the highest patient survival statistics in the nation. Out of curiosity, I also looked up some of the surgeons at my mom's HMO and wow are there some major differences in survival rates between surgeons. Generally, you want to go to a facility which does hundreds of your type of valve surgeries per year, not dozens, and you want a surgeon who is high volume and very experienced. It is also a good idea to choose a surgeon whose patients tend to survive. ;)

The consultations were very different. The surgeon from Cedar Sinai only gave me about 15 minutes, of which about 12 minutes was taken up by him giving me a very basic talk about my condition. As I had already read about 50 published papers about my condition and watched hours of detailed videos, his talk was very elementary to me, but I dare not interupt him as he used his 3d heart model to explain to me what an aortic valve is and what aortic stenosis is. The problem was that his talk was so long that there was only enough time for one question from me and he was off.

My consultation at UCLA was very different, with Dr. Shemin taking over an hour of his time to answer all of my questions. He seemed eager to engage me in discussions about the published literature. He had excellent bedside manner and came across as though he really cared. I think if I had a choice between two surgeons, one with great bedside manner and poor survival stats and one with the personality of a bag of rocks, but excellent statistics, I would go with the bag of rocks guy with good stats. But, in this case both had great resumes and statistics, so I chose the one who was willing to give me his time and appeared to care.

Another idea is to ask your cardiologist which hospital he would choose and which surgeon, if he needed this procedure. You can then do your due diligence on his suggestion. I like to get second opinions, and I asked several cardiologists this question. Also, I found it interesting to ask the techs who performed the echos the same question. Many of them have been around for decades and they tend to have some good info on who is the best at their local hospital.

US News ranking of best hospitals:


This is the site which has the scores for each surgeon. When I used it before it was free, and it seems to require a membership now. It is probably well worth the $15 or so that they charge to join.


Best of luck and keep us posted on how things are coming along.
 

carolinemc

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Well, I'm new here but it appears I may need a valve replacement. 30 years or so ago I was told I had a bicuspid valve instead of a tricuspid valve. They said it was fine then but may leak later on in life. Well it's later on in life now. I don't have any symptoms yet. I am on blood pressure meds and I got light headed and my blood pressure was low so the Dr dropped my dosage and it seemed all was well but she wanted me to get an echo just to rule out anything. Well it showed the bicuspid valve with severe stenosis. I'm going to get an MRI then will talk to the valve surgeon. I will talk to them but I'm pretty sure I don't want this done at the local hospital. I live in WV about 1:15 from Johns Hopkins. Cleveland looks to be a 5 hour trip. I'm trying to research Dr's and Hospitals and the quaintly of procedures they do. Not having much luck in that search. Any help I could get would be appreciated.
I've never been sick or been cut on except tonsils when I was a little kid. I own a steel construction company, a restaurant and a farm. I'm not looking forward to a surgery that's gonna put me on my back but I guess it will be what it is. I'm hoping to talk about the robotic surgery instead of the wide open method with the surgeon. Glad there is a forum here to talk about this.
That may depend on your medical insurance of where you are covered, for outside it may not cover where you go for surgery. You are having symptoms, light headiness and blood pressure problems. And you may not be aware of your breathing problems also. And if you do this at John Hopkins, you should have someone with you for the 5 hour drive back, for you will not be able to drive for a time. And we all have to lay back to have our chest open. Good luck in what you find out.
 

Lucker

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AFAIK robotic surgery is a very perspective method. The surgeon still operates the robot (DaVinci for example) manually, bit since the robot has cameras and precise manipulators its possible to minimise the wounding. It's a next level endoscopic surgery basically. But, to my knowledge, surgical robots are mostly used in repairs and not in the valve replacement.
 

Chuck C

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But, to my knowledge, surgical robots are mostly used in repairs and not in the valve replacement.

I believe that is correct. Robotic surgery is becomming more common for mitral valve repair. To my knowledge, it is not an option when one has severe aortic stenosis.
 

priley

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Hey there ... personally I feel that being alive is better than being dead, but you may argue the point on that.

I've had three goes at skipping out on being dead just yet.



I'm not clear on this "robotic surgery" and despite being a great fan of science fiction in books and movies I'm a a big fan of science fact and indeed deeply conservative science fact and long term positive outcomes in my actual life.

So, what can you tell me about this robotic surgery and why its better than the surgery where a surgeon does it with tools (or even "wide open").

I've been "wide open" 3 times in my life, its known as the gold standard and its also known that sometimes it starts as minimal and and ends up being more opened up. I can't talk about technical aspects of surgery because I'm just not qualified.

I understand that there are some slight advantages with respect to sternal healing, and perhaps a bit of time in recovery with the so-called mini sternotomy. Also, is this perhaps the "minimally invasive" surgery?

I don't know your age (mines in my bio) or if you have any aneurysm yet or not.

Either way, welcome aboard and look forward to any discussions.

Best Wishes
I'm 60, The robotic surgery I'm speaking about is the one that the surgeon sits at a video game looking device and can manipulate the arms/tools inserted through openings between the ribs. Not sure if this surgery can be done that way or not. I'm getting a MRI wed. and will speak to the Dr after that to see what his opinion is. Like I said, I doubt I will used this Dr as I doubt a small hospital in Winchester Va ( 45 minutes away) vs Johns Hopkins (1 hr and 15 minutes away, closer if the Howard County or Bethesda MD location is their heart center) does nearly as many surgeries. I'm not against going to Cleveland if that would give me more comfort.
 

priley

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That may depend on your medical insurance of where you are covered, for outside it may not cover where you go for surgery. You are having symptoms, light headiness and blood pressure problems. And you may not be aware of your breathing problems also. And if you do this at John Hopkins, you should have someone with you for the 5 hour drive back, for you will not be able to drive for a time. And we all have to lay back to have our chest open. Good luck in what you find out.
 

priley

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I haven't talked to the insurance co yet but I assume they will cover Hopkins. They covered Hopkins for my wife after the same hoIspital (Winchester VA) botched her cancer surgery and we went to Hopkins and got exceptional results. I have had no symptoms except the few times I got light headed. I checked my blood pressure and it was low. I spoke to my primary Dr and she cut the lisinopril dose from 10mg to 5 mg and everything straightened out. So I wasn't prepared for what I was told, but then again who is? Breathing isn't an issue yet.I walk all the time in the restaurant and especially the farm. Not so much in the construction business as I'm mostly in the office. Thanks so much for the input.
 

pellicle

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Good morning


well that's actually a great time for surgery IMO because this avails you of a lot more of the choices in the current medical repertoire as being good choices. You pretty much no longer need to worry about the early onset of SVD in tissue valves (and may even get 15 years from such) and at 60 if you chose a mechanical valve ACT is not such an issue because you're professional Boxing or Soccer Career is probably winding down anyway.


The robotic surgery I'm speaking about is the one that the surgeon sits at a video game looking device and can manipulate the arms/tools inserted through openings between the ribs. Not sure if this surgery can be done that way or not.

me neither, but as someone who's worked on lots of machines, grew up in a grazier family so have experience butchering animals (as well as done an amount of hunting) I can say that when surgeons say to me that "there is so much they understand when they see what's in there with their own eyes and feel it" I know that I'd prefer a skilled surgeon.

Its my observation here over the years of being here that people panic about the most odd things and leave as unconcerning the things they should actually be concerned about.

I'm getting a MRI wed. and will speak to the Dr after that to see what his opinion is.
that's a good approach

Like I said, I doubt I will used this Dr as I doubt a small hospital in Winchester Va ( 45 minutes away) vs Johns Hopkins (1 hr and 15 minutes away,
always best to pick the best facility I would feel.

I'm Australian so I can't speak anything about the hospitals you are availed of there.

Either way it would seem to me that you got the best outcome of an early diagnosis of aortic valve dysfunction: a long life before surgery.

I think there is an excellent chance that you'll walk from surgery and within a few months of recovery be as good as new.

Best Wishes
 

priley

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I believe that is correct. Robotic surgery is becomming more common for mitral valve repair. To my knowledge, it is not an option when one has severe aortic stenosis.
Dr Badwar is doing aorta robotic surgery at WVU. It looks new.
 

Chuck C

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Dr Badwar is doing aorta robotic surgery at WVU. It looks new.

Excellent. However, I'm going to double down on my comment that I believe it is just for repair and not valve replacement. Hopefully you can discuss this during your upcoming consult and see if it is an option. They have been doing robotic mitral valve repair for some time. I consulted with Dr. Alfredo Trento at Cedar Sinai and one of his specialties is robotic mitral valve repair. It does sound like aortic valve repair is relatively new.
 

pellicle

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quick google results

and 'just' repair

I guess it all goes back to my original reply (underline added for emphasis):

I'm not clear on this "robotic surgery" and despite being a great fan of science fiction in books and movies I'm a a big fan of science fact and indeed deeply conservative science fact and long term positive outcomes in my actual life.

To clarify a point for @priley I refer to this article:

Conclusions: TAVR was associated with a significantly higher all-cause mortality at 5 years compared with SAVR. Of note, all-cause mortality presented a characteristic temporal pattern showing increased risk between 2 and 5 years but not within 2 years. Longer-term follow-up data are warranted.

so it would seem to me that while the general public (who usually are not even remotely expert) are clamouring for a quick and breezy operation the studies show that the gold standard still has the best long term outcome. I guess much of this comes down to "how long do you think of as a long time?"

My observation of people fresh to the idea of needing surgery is they suffer from temporal myopia (where seeing 5 years from now seems blurry) but those of us who have seen ten years pass since a surgery sort of expect it to give us another 10. Myself on my 3rd OHS, I expected 20 right from the start.

Another observation I've made is that people go from verging on hysterical panic when its identified that they need OHS to "meh, so what if I need another surgery in five years" before they've even had their first.

It is of course nothing that I'm invested in (the decisions of others), I'm only here to offer thoughts and discussion (as was asked for in the first post).

Best Wishes
 
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Just wondering, if I understand this correctly, seems like the samples are from pre-2019 and would have to be at least 5 years older. Seems like back then TAVR was pretty much only used on older folks. So wouldn’t higher all-cause mortality be expected? (Or do they somehow correct for this)? Just wondering?
 

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