First surgical consult down!

[SatoriFound]

So I went to my first surgical consult. It was with Dr. Alexis Shaffi at Baylor/St. Luke's. The first thing he explained was what the size of my aorta should be for a person my size, I think it was like a quarter, I don't remember exactly, but he said that currently it was the size of a pencil eraser! That is just crazy to me. He said at my age, 51, it could go either way, biological or mechanical valve. I asked about the cardiologist's statement that for bicuspid valves biological is the better choice and he looked at me like I was crazy. LOL He didn't know of any research to support that statement either. He didn't seem to have a strong opinion either way. We talked about the nose bleeds I get, but he said he doesn't believe it contraindicates a mechanical valve as I have only been to the hospital once for them. He stated if I chose a mechanical that the On-X was the way to go due to lower inf threshold required for them. He also stated he wasn't recommending repairing the aortic aneurysm since it is only 4.5, but this is dependent on looking at the films of the CT which he hadn't gotten yet. He wants to make sure it was measured correctly. He stated that the aneurysm most likely wouldn't stop growing with the new valve it was just a matter of how long until it crossed the threshold to needing surgery. He also wants to see positioning of my aortic valve, etc, since I have unconventional heart placement due to the pectus excavatum. This seems like a wasted opportunity to me. Why would you not fix both problems when you know the other one will be needing repair in the future? He stated it was due to added complexity and added risks, but he also stated that despite the added complexity it only added about 20 minutes to the operation time. Why would you want to put someone through TWO open heart surgeries when you could do it all in one? Two recovery periods.... *sigh* I got the impression he prefers tissue valves, but I could be wrong. He was quite difficult to read. The nurse told me once I get my second opinion, if I decide to go with this doctor they could schedule the surgery within two weeks.

I am dropping off my test results with Dr. Reardon's office at Houston Methodist tomorrow as the organization that has them has had my request to send them in the processing status and the office won't make the appointment without the testing results. Hopefully they can get me in quickly and then I can kick this thing off!

Both doctors are highly respected, as are the hospitals they work with, so I don't even know what will be the deciding factor in who I choose to go with.

 

[Deidra]

Hey!

I just had my bicuspid valve + dilated aorta replaced with an On-X mechanical valve + aortic prosthesis in May and I'm doing great. Pre-surgery I had severe regurgitation and a 5cm aortic root. My surgeon was in agreement with me that doing both in one surgery made a lot of sense, since many people with bicuspid valves end up with aneurysms at some point down the line anyway. The studies I've read show that the average survival rate of people who get the valve and aortic root replaced is actually higher than those who only get the valve replaced.

In my opinion, definitely not worth it to wait and potentially go through 2 heart surgeries when you could just get a mechanical valve + ascending prosthesis and have a good chance at not needing surgery for it again.

Also, in my view, 51 is not in "could go either way" territory and is squarely in mechanical valve territory. But of course other people here may disagree. I'm aware that the guidelines say 50-65 is up to patient preference.

 

[SatoriFound]

If my aneurysm measured 5 he would have recommended it, but it only measures 4.5, that is why he is going to check the films and make sure the measurement was taken the correct way. I guess younger people getting bioprosthetics is trending thinking. They are doing more and more studies on it. But I don't see any justification in getting 3 or 4 surgeries in your lifetime, rather than potentially just one. It doesn't make sense. Every time you go under anesthesia there is risk. The doctors just figure they will do valve in valve with TAVR the next time. I am young and healthy (besides the heart issue) NOW, who knows what shape I will be in then.

I will wait and see what the second doctor says about doing both fixes and go from there.

 

[Chuck C]

Glad that you got your consult.

I asked about the cardiologist's statement that for bicuspid valves biological is the better choice and he looked at me like I was crazy. LOL He didn't know of any research to support that statement either

That would be consistent with what a few of us told you- no research whatsoever to support that claim by the cardiologist. Glad the surgeon acknowledged this.

He also stated he wasn't recommending repairing the aortic aneurysm since it is only 4.5

He stated that the aneurysm most likely wouldn't stop growing with the new valve it was just a matter of how long until it crossed the threshold to needing surgery.

Why would you want to put someone through TWO open heart surgeries when you could do it all in one? Two recovery periods.... *sigh*

Exactly. Why plan for multiple open heart surgeries when you can get both issues taken care of at once? He is going by the guidelines that indicate not to do the aneurysm repair unless it is 5.0cm, but there is a lot of discretion on the part of the surgeon in this regard. If it were me, I would push to get it taken care of during your SAVR. When I went in for my aortic valve surgery, there was no plan to repair my aorta- which was only 3.6cm. However, when my surgeon got his eyes on the aorta, from his experience, the aortic tissue had the appearance that it would need repair down the road. It was not an easy call to make, but he decided to repair the aorta so that I could avoid future OHS. He has done thousands of valve surgeries and was going based on his vast experience. He also knew very well that I had chosen mechanical because I wanted to be one and done, and this knowledge played a big part in his decision. In my view he made the correct one.

I believe this is the study which @Deidra was referring to, which shows long term outcomes superior for Bentall patients (aortic valve and aortic repair) comparied to patients who only received aortic valve surgery. This would be another argument to get both taken care of at once than multiple OHS. See link below.

"Discharged patients enjoyed survival equivalent to a normal age- and sex-matched population and superior to survival reported for a series of patients with aortic valve replacement alone."

https://www.annalsthoracicsurgery.org/article/S0003-4975(07)00667-4/fulltext#:~:text=During a mean follow-up,and 89% after 10 years.

But I don't see any justification in getting 3 or 4 surgeries in your lifetime, rather than potentially just one.

This is exactly how I see it and why I made the valve choice that I did. Better to plan for one surgery than to plan for multiple ones. Planning for 3 or 4 surgeries will shorten life expectancy- probably significantly. Some surgeons seem not too concerned about this. It is the patient and not the surgeon who is the one who will be experiencing multiple surgeries, so I would say self advocate in this regard.

I think that it's good that you're getting a second opinion soon. Please let us know how that goes.

 

[SatoriFound]

Glad that you got your consult.


That would be consistent with what a few of us told you- no research whatsoever to support that claim by the cardiologist. Glad the surgeon acknowledged this.




Exactly. Why plan for multiple open heart surgeries when you can get both issues taken care of at once? He is going by the guidelines that indicate not to do the aneurysm repair unless it is 5.0cm, but there is a lot of discretion on the part of the surgeon in this regard. If it were me, I would push to get it taken care of during your SAVR. When I went in for my aortic valve surgery, there was no plan to repair my aorta- which was only 3.6cm. However, when my surgeon got his eyes on the aorta, from his experience, the aortic tissue had the appearance that it would need repair down the road. It was not an easy call to make, but he decided to repair the aorta so that I could avoid future OHS. He has done thousands of valve surgeries and was going based on his vast experience. He also knew very well that I had chosen mechanical because I wanted to be one and done, and this knowledge played a big part in his decision. In my view he made the correct one.

I believe this is the study which @Deidra was referring to, which shows long term outcomes superior for Bentall patients (aortic valve and aortic repair) comparied to patients who only received aortic valve surgery. This would be another argument to get both taken care of at once than multiple OHS. See link below.

"Discharged patients enjoyed survival equivalent to a normal age- and sex-matched population and superior to survival reported for a series of patients with aortic valve replacement alone."

https://www.annalsthoracicsurgery.org/article/S0003-4975(07)00667-4/fulltext#:~:text=During a mean follow-up,and 89% after 10 years.


This is exactly how I see it and why I made the valve choice that I did. Better to plan for one surgery than to plan for multiple ones. Planning for 3 or 4 surgeries will shorten life expectancy- probably significantly. Some surgeons seem not too concerned about this. It is the patient and not the surgeon who is the one who will be experiencing multiple surgeries, so I would say self advocate in this regard.

I think that it's good that you're getting a second opinion soon. Please let us know how that goes.

maybe I'll print out the study. I just want to make sure there isn't a newer study that shows survival rates to be the same. LOL

 

[pellicle]

Hi

I also read your initial post and as Chuck actually addressed everything I would have said (and I'm point that out to say I would have said the same things" I thought I'd move onto other points. With respect to this:

But I don't see any justification in getting 3 or 4 surgeries in your lifetime, rather than potentially just one. It doesn't make sense.

its vexing and I'm tempted to totally agree here, but from the surgeons perspective there may be something else at work, such as arse covering. For all I know there is some constraint on the part of the surgeon to not do anything that's not covered in the schedule (created by an actuary in the employ of one of medical insurance companies) may negate his "professional indemnity" insurance and leave him personally exposed to any malpractice suit ... dunno ¯\_(ツ)_/¯

At the very least the whole idea of preventative maintenance has yet to permeate medicine.

Aside from that all I'd do is perhaps ask the next guy why can't it be done given the stated opinion is "...that the aneurysm most likely wouldn't stop growing with the new valve it was just a matter of how long until it crossed the threshold to needing surgery."

vexing

 

[dornole]

I would agree with others that 51 is pretty young to be considering a tissue valve. Technically the AHA guidelines (Section 11.1.2) say under 50 rec. mechanical, over 65 rec tissue, age 50-65 debatable.

https://www.ahajournals.org/doi/10.1161/CIR.0000000000000923

The guidelines say the predicted 15-year risk of needing re-operation because of structural deterioration of a tissue valve is 22% for patients like you who are 50 years of age. Same 15-year failure rate is 30% for patients 40 years of age, and 50% for patients 20 years of age. For age 65 it drops to 10% failure over 15 years, at which point you're 80. (sadly no failure data are given beyond 15 years out, which is a bummer for a 50 year old hoping to also live to age 80) So the age really is critical.

It comes down to this - does this describe you?

Despite the significantly higher rate of bioprosthetic structural valve deterioration observed in younger versus older patients, many younger patients choose to avoid a mechanical prosthesis because they are unwilling to consider long-term VKA therapy.

It seems like you're leaning more this way:

Some patients prefer to avoid repeat surgery and are willing to accept the risks and inconvenience of lifelong anticoagulant therapy.

I'm headed to surgery myself in 2 weeks, I'm 56. Going for a mechanical mitral valve. I can't imagine setting myself up for repeat surgery. To me warfarin seems like a slam dunk tradeoff of risk compared to additional surgeries. I don't get the inconvenience argument either. I mean, I've done DAILY finger sticks just for a weight loss program. It's nothing.

One crucial issue to ask about regarding your aneurysm is whether is insurance will consider replacement medically necessary at its current diameter and cover it -- from the experiences listed above, sounds like they will based on the surgeon's judgement. My surgical plan says Mitral Valve Replacement, Possible Tricuspid Repair, Possible Tricuspid Replacement, Possible Maze procedure, possible Left Atrial Appendage Ligation. Said it's for insurance purposes to list it all there.

If I were you I'd get a mech valve and aortic prosthesis and get on with your life. Only reason not to

unwilling to consider long-term VKA therapy.

Good luck with your second opinion!

 

[dornole]

Critter posted this guideline on the bicuspid / aortic aneurysm thread:

Concomitant aortic valve surgery ≥4.5 cm

That's where you are so I hope you can get both issues fixed now.

 

[SatoriFound]

Hi

I also read your initial post and as Chuck actually addressed everything I would have said (and I'm point that out to say I would have said the same things" I thought I'd move onto other points. With respect to this:


its vexing and I'm tempted to totally agree here, but from the surgeons perspective there may be something else at work, such as arse covering. For all I know there is some constraint on the part of the surgeon to not do anything that's not covered in the schedule (created by an actuary in the employ of one of medical insurance companies) may negate his "professional indemnity" insurance and leave him personally exposed to any malpractice suit ... dunno ¯\_(ツ)_/¯

At the very least the whole idea of preventative maintenance has yet to permeate medicine.

Aside from that all I'd do is perhaps ask the next guy why can't it be done given the stated opinion is "...that the aneurysm most likely wouldn't stop growing with the new valve it was just a matter of how long until it crossed the threshold to needing surgery."

vexing

I get it. It almost sounded like if I wanted to get them both he might consider it, it was weird. At the end it almost sounded like we were revisiting, but ultimately he wanted to see the CT video. My online heart surgeon friend is in Europe. He said he would fix the aneurysm at the same time. When I see the second surgeon I will see what he says, I am going to drop the CD of the CT off tomorrow, so once I get an appointment he can review it ahead of time, I'm dropping one off to the first surgeon tomorrow too. I will talk to this second doctor more in depth about it as I have decided I would like to get that issue fixed at the same time, if possible. I also figured out I was a bit shell shocked at that first appointment. My thoughts seemed to have flown out of my head.

I was wondering if it is possibly an insurance issue and they won't pay for it if it isn't within parameters. If it is insurance that makes more sense as a second open heart surgery is far more expensive than taking care of both issues at once. I should have said more at the first appointment, but I was aware that there was a bit of a time crunch as his office called when I was on my way in and asked me to hurry in because the doctor had to go into surgery. As it was I was almost there, and almost an hour early. LOL But after he has viewed the images I will have more of a conversation with him about fixing the aneurysm at the same time, unless of course it turns out they measured wrong and it is actually a lot smaller.

 

[SatoriFound]

Critter posted this guideline on the bicuspid / aortic aneurysm thread:

Concomitant aortic valve surgery ≥4.5 cm

That's where you are so I hope you can get both issues fixed now.

That is only for those with Marfan. It is greater than or equal to 5 with just a bicuspid valve.

 

[SatoriFound]

The guidelines say the predicted 15-year risk of needing re-operation because of structural deterioration of a tissue valve is 22% for patients like you who are 50 years of age. Same 15-year failure rate is 30% for patients 40 years of age, and 50% for patients 20 years of age. For age 65 it drops to 10% failure over 15 years, at which point you're 80. (sadly no failure data are given beyond 15 years out, which is a bummer for a 50 year old hoping to also live to age 80) So the age really is critical.

It comes down to this - does this describe you?

Despite the significantly higher rate of bioprosthetic structural valve deterioration observed in younger versus older patients, many younger patients choose to avoid a mechanical prosthesis because they are unwilling to consider long-term VKA therapy.

It seems like you're leaning more this way:

Some patients prefer to avoid repeat surgery and are willing to accept the risks and inconvenience of lifelong anticoagulant therapy.

I'm headed to surgery myself in 2 weeks, I'm 56. Going for a mechanical mitral valve. I can't imagine setting myself up for repeat surgery. To me warfarin seems like a slam dunk tradeoff of risk compared to additional surgeries. I don't get the inconvenience argument either. I mean, I've done DAILY finger sticks just for a weight loss program. It's nothing.

One crucial issue to ask about regarding your aneurysm is whether is insurance will consider replacement medically necessary at its current diameter and cover it -- from the experiences listed above, sounds like they will based on the surgeon's judgement. My surgical plan says Mitral Valve Replacement, Possible Tricuspid Repair, Possible Tricuspid Replacement, Possible Maze procedure, possible Left Atrial Appendage Ligation. Said it's for insurance purposes to list it all there.

If I were you I'd get a mech valve and aortic prosthesis and get on with your life. Only reason not to

unwilling to consider long-term VKA therapy.

Good luck with your second opinion!

A failure rate of 22% within 15 years can mean it fails day 1 or on the day of the 15th year. The valve could possibly fail at year 3, or 8.... I could be incredibly unlucky and be on my third operation before 70. It doesn't make sense to take the risk when mechanical, while not guaranteed to last a lifetime, comes as close to that as possible.

And why does it fail in those 15 years in younger people more often than older? Is it because older people die of something else before they hit the 15 year mark? Or did they take those who died completely out of the study? Ultimately it is too up in the air. I already take daily medication, and monitor my blood pressure, it isn't that much work to add in one more medication and testing my inr levels, especially since I can do it at home?

The doctor didn't mention it being an insurance issue, he stated increased complexity and increased, ah dang it, I forget the words. It's late, I'm going to bed. LOL

 

[V__]

Sounds like you are making progress and doing the right steps!

the size of my aorta ... he said that currently it was the size of a pencil eraser!

Which is what? I have seen many pencil erasers, in all sorts of forms and sizes

dependent on looking at the films of the CT

Did he actually say that? It's all digital data now, especially with CT.

That is only for those with Marfan. It is greater than or equal to 5 with just a bicuspid valve.

Maybe it would be useful to bring up Marfan question to the surgeon's attention? I remember you self-tested (or self-concluded) on this possibility. But it's a bit different with doctors looking into this factor from pov of surgery planning.

And why does it fail in those 15 years in younger people more often than older? Is it because older people die of something else before they hit the 15 year mark? Or did they take those who died completely out of the study?

The information I gleaned from this forum:

• The more active immune system may be a factor.
• The more active lifestyle may be a factor.

Or maybe a combination of the two. Not sure how well this is supported by the medical data though. Could be a semi-open question. You can search the forum for the citations. But for your decision-making this is probably a good enough empirical observation.

it isn't that much work to add in one more medication and testing my inr levels, especially since I can do it at home?

This is probably a very personal decision. I know people who would ace this task, people who would be dangerous when burdened with it, people who would complain about it ad infinum, and people who would be proud, tickled by the opportunity, and empowered by the process.

Hope it helps

 

[SatoriFound]

Which is what? I have seen many pencil erasers, in all sorts of forms and sizes

A regular size pencil eraser on the end of a pencil. LOL

Did he actually say that? It's all digital data now, especially with CT.

He didn't say film. LOL He said CT images or something like that. For some reason they can't digitally transfer that information to me. *shrug* I had to call the business office and have the imaging put on a CD. Then I went and picked it up because they would have to mail it.

Maybe it would be useful to bring up Marfan question to the surgeon's attention? I remember you self-tested (or self-concluded) on this possibility. But it's a bit different with doctors looking into this factor from pov of surgery planning.

I have run my dna files through Promethease and show NO Marfan or Ehler's Danlos markers. None of the genes they have shown to effect the valve showed up either, NOTCH and those types. Zero connective tissue disorders detected in my dna. Also since I am incredibly tall and do have Pectus Excavatum, my cardio did measure my arm span and it was normal for my height. He did tell me my children would need to get their hearts imaged as bicuspid valves tend to run in families. All that said, there could be some gene I have that hasn't been discovered yet. Two out of three of my children have hyper-flexibility and my sister was apparently diagnosed with flexible Ehler's Danlos which I guess has no genetic markers attached to it yet. Although, I tend to doubt her diagnosis as I know my sister.

The information I gleaned from this forum:

• The more active immune system may be a factor.
• The more active lifestyle may be a factor.

Or maybe a combination of the two. Not sure how well this is supported by the medical data though. Could be a semi-open question. You can search the forum for the citations. But for your decision-making this is probably a good enough empirical observation.

I used to snowboard a lot, but I live in Texas now and after getting ankle surgery due to hole in my ankle bone, basically caused by my snowboarding, long story, I probably won't again. I am basically a home body and mechanic valve is where I am leaning. I don't really want to be on anti-coagulants, who does. But in the end it is just another medication, and just another number to keep track of.

This is probably a very personal decision. I know people who would ace this task, people who would be dangerous when burdened with it, people who would complain about it ad infinum, and people who would be proud, tickled by the opportunity, and empowered by the process.

Hope it helps

 

[V__]

A regular size pencil eraser on the end of a pencil. LOL

Thanks. That sounds very small. Like, 0.25 cm^2 or so.

I have run my dna files through Promethease and show NO Marfan or Ehler's Danlos markers.

All that said, there could be some gene I have that hasn't been discovered yet. Two out of three of my children have hyper-flexibility and my sister was apparently diagnosed with flexible Ehler's Danlos which I guess has no genetic markers attached to it yet. Although, I tend to doubt her diagnosis as I know my sister.

Two things:

• The above is your judgement and the conclusions. The doctor's approach might be different.
• I don't think the diagnosis is made solely on the basis of the genetic test. Because there are the disease incidences in the family tree without the identified genetic markup. Which points to the un-discovered genes (or other factors), as you said.

But in the end it is just another medication, and just another number to keep track of.

Glad to hear you don't see an issue with it!