26M 5.1cm Aortic Root Aneurysm + Bicuspid Valve Surgery

[ncw3642]

Hi all,

I am a 26-year old male who had a known history of BAV (known since 2020). Currently asymptomatic with mild to moderate regurgitation. New cardiologist did a Chest CTA and found my aortic root is dilated ‘up to 5cm’ and referred me to CT surgery.

After meeting with my cardiothoracic surgeon, we have decided to perform a valve sparing root replacement (David Procedure). I have the least common Type 0 valve morphology and according to my surgeon these are the easiest to ‘repair’ with good long lasting results. Given my age and otherwise healthy valves/heart, he believes I do not need to have the valve replaced yet and might not for 10-30 years.

My scheduled surgery date is July 10th- so now begins the journey of ‘waiting’ and ‘anticipating’ which is harder than just having it done in my mind.

I am very lucky I had a routine echo and CTA that showed the aneurysm- as I am otherwise asymptomatic and at its size (5.1cm) I would have had no predictors before it potentially ruptures. I am looking at this as a gift, given my type 0 bicuspid valve and hoping the repair and root replacement lasts me a lifetime.

Does anyone know the benefits to doing a repair first for a bicuspid (type 0) valve with mild to moderate regurgitation vs just a mechanical valve? I think I could manage my INR with a mechanical valve. I am very active lifting 5x a week and otherwise healthy but my surgeon also said the mechanical valve isn’t guaranteed to last forever and with the type of bicuspid valve I have, the repair results are great.

Thank you all so much.

 

[Deidra]

Hey! Welcome to the forum. Glad you got things checked and are having surgery in a timely manner.

My situation actually had a lot in common with what you're describing. I'm 28 yrs old and had a Type 0 BAV. Moderate-severe regurgitation that crept up to severe in the past few years. 5cm dilation of the aortic root. Just had a mechanical Bentall procedure about a month ago to replace the valve and root of the aorta. Surgical pathology showed that my aorta had elastic fiber fragmentation and the valve itself also had degenerative changes, so it was correct to replace both. Obviously this is not true for everyone's valves.

my surgeon also said the mechanical valve isn’t guaranteed to last forever

This is an interesting statement. Sure it's not a guarantee, but it's as close to one as you can get. Unless something like endocarditis or pannus or a large clot on the valve occur, which are relatively rare, mechanical valves do last a lifetime. dick0236 on the forum had an aortic valve replaced with a ball-in-cage design in 1967 and he is doing just fine, and that's one of the older models.

I can't speak to the particulars of valve repair and David procedure. Obviously the upside is that you won't need to take blood thinners. The downside is that you might be more likely to have another surgery down the line vs. mechanical, but its hard to say really. I don't know what the re-op rates look like for David procedures, might be worth looking into.

If you get the mechanical valve now, yes you have to deal with blood thinners (which it sounds like you are ready and willing to do, and isn't as big of a deal as some make it out to be), and you set yourself up for no additional surgeries for the valve. With the David procedure, it's harder to say that it will last a lifetime. I believe pellicle had a repair and it lasted him 18 years. If you do need another operation in 20-30 years, how would you feel about that? Maybe it's worth it for you since those years will be blood thinner free.

Whichever you pick, it's good that you're getting the problem addressed. These surgeries are phenomenally effective and surgeons and their teams are incredibly experienced these days. It sounds like your surgeon in particular has experience with valve repairs. My recovery after surgery as an otherwise healthy 28 year old has been very smooth and uneventful.

 

[ncw3642]

Hey! Welcome to the forum. Glad you got things checked and are having surgery in a timely manner.

My situation actually had a lot in common with what you're describing. I'm 28 yrs old and had a Type 0 BAV. Moderate-severe regurgitation that crept up to severe in the past few years. 5cm dilation of the aortic root. Just had a mechanical Bentall procedure about a month ago to replace the valve and root of the aorta. Surgical pathology showed that my aorta had elastic fiber fragmentation and the valve itself also had degenerative changes, so it was correct to replace both. Obviously this is not true for everyone's valves.


This is an interesting statement. Unless something like endocarditis or a large clot on the valve occur, which are relatively rare, mechanical valves do last a lifetime. dick0236 on the forum had an aortic valve replaced with a ball-in-cage design in 1967 and he is doing just fine, and that's one of the older models.

I can't speak to the particulars of valve repair and David procedure. Obviously the upside is that you won't need to take blood thinners. The downside is that you may need another surgery down the line. I don't know what the re-op rates look like for David procedures, might be worth looking into.

If you get the mechanical valve now, yes you have to deal with blood thinners (which it sounds like you are ready and willing to do, and isn't as big of a deal as some make it out to be), and you set yourself up for no additional surgeries for the valve. With the David procedure, it's harder to say that it will last a lifetime. I believe pellicle had a repair and it lasted him 18 years. If you do need another operation in 20-30 years, how would you feel about that?

Whichever you pick, it's good that you're getting the problem addressed. These surgeries are phenomenally effective and surgeons and their teams are incredibly experienced these days. My recovery after surgery as an otherwise healthy 28 year old has been very smooth and uneventful.

Thank you so much for all this information! Very helpful.

Yes, I was initially confused with his comment on mechanical not necessarily lasting a lifetime either. He also touched on IF the mechanical valve failed, it would be harder to replace due to the scar tissue adhesion of the valve after a number of years vs if he did the repair and had to replace, it would be fairly routine and he favors keeping a native valve as long as you can (given that mine is otherwise completely healthy with no stenosis). If he opens me up and cannot repair it, I have chosen a mechanical On-X as the backup choice.

I am also wondering if I should have part of my ascending aorta replaced as well. He didn’t touch in it but in my CTA, the root sure was 5.1cm but the other measurements from echo and CTA were:

Echo:
1. Low normal global left ventricular systolic function. Ejection Fraction is estimated at 50-55 %. Normal left ventricular diastolic function. Normal left ventricular cavity size. LV wall thickness is within normal limits.
2. Normal right ventricular systolic function. Normal right ventricular size.
3. Probable bicuspid AV. There is probably adequate aortic valve cusp separation.

There is no aortic stenosis. Mild to moderate, eccentric aortic valve regurgitation.

CTA:

There is a type 0 bicuspid aortic valve with 2 dominant sinuses of Valsalva with each of the main coronary arteries arising from one of the dominant sinuses respectively. Aortic measurements are as follows:

Sinus of Valsalva (cusp-to-commissure): 50 mm x 36 mm
Sinotubular junction: 37 mm x 34 mm
Mid-ascending aorta: 36 mm x 35 mm
Mid-aortic arch (between origins of the left common carotid and subclavian arteries): 26 mm x 24 mm
Mid-descending aorta: 21 mm x 21 mm Aorta at the diaphragm: 20 mm x 20 mm

The mid ascending aorta and the sinotubular junction measures of 3.7 and 3.5 respectively concern me. I am going to bring these up day of surgery with him to see, but do you think that’s cause for concern? I have no family history of aneurysm and as far as I know no other signs of Marfans.

 

[Deidra]

He also touched on IF the mechanical valve failed, it would be harder to replace due to the scar tissue adhesion of the valve after a number of years vs if he did the repair and had to replace, it would be fairly routine and he favors keeping a native valve as long as you can (given that mine is otherwise completely healthy with no stenosis). If he opens me up and cannot repair it, I have chosen a mechanical On-X as the backup choice.

This all sounds reasonable to me. If your surgeon thinks you can get a good long while out of the native valve still, it could be worth a shot. A lot of re-ops for people who get solely valve replacements are driven by aneurysm formation/aorta dilation, so getting it done now is great. I know you said your surgery is already scheduled, but it could be worthwhile to seek out another opinion if you have any doubts. I didn't, but I felt 100% confident in my surgeon's ability and opinion of my situation.

The mid ascending aorta and the sinotubular junction measures of 3.7 and 3.5 respectively concern me. I am going to bring these up day of surgery with him to see, but do you think that’s cause for concern? I have no family history of aneurysm and as far as I know no other signs of Marfans.

Again, I'm not familiar with valve-sparing aortic root replacements so maybe someone more qualified can speak on this. But as far as I'm aware most surgeries of that type replace the entire ascending aorta up to the first bifurcation. This includes the sinotubular junction and mid ascending aorta. Either way, worth bringing up to your surgeon just so you 100% understand what they're going to do to you. Here's an image:

 

[tjay]

Hi all,

I am a 26-year old male who had a known history of BAV (known since 2020). Currently asymptomatic with mild to moderate regurgitation. New cardiologist did a Chest CTA and found my aortic root is dilated ‘up to 5cm’ and referred me to CT surgery.

After meeting with my cardiothoracic surgeon, we have decided to perform a valve sparing root replacement (David Procedure). I have the least common Type 0 valve morphology and according to my surgeon these are the easiest to ‘repair’ with good long lasting results. Given my age and otherwise healthy valves/heart, he believes I do not need to have the valve replaced yet and might not for 10-30 years.

My scheduled surgery date is July 10th- so now begins the journey of ‘waiting’ and ‘anticipating’ which is harder than just having it done in my mind.

I am very lucky I had a routine echo and CTA that showed the aneurysm- as I am otherwise asymptomatic and at its size (5.1cm) I would have had no predictors before it potentially ruptures. I am looking at this as a gift, given my type 0 bicuspid valve and hoping the repair and root replacement lasts me a lifetime.

Does anyone know the benefits to doing a repair first for a bicuspid (type 0) valve with mild to moderate regurgitation vs just a mechanical valve? I think I could manage my INR with a mechanical valve. I am very active lifting 5x a week and otherwise healthy but my surgeon also said the mechanical valve isn’t guaranteed to last forever and with the type of bicuspid valve I have, the repair results are great.

Thank you all so much.

If your valve itself is doing fine, could the "up to 5cm" aortic root be managed and closely monitored for the time-being? About 10 years ago, they revised aorta to be 5.5cm for BAV patients (given dilation of tissue is associated) before aorta by itself is warranted for surgery. If your valve was ALSO in a bad shape, then 5.0cm aorta is another qualifier for surgery.

Not trying to sway you one way or another, since 5cm aorta is not something to brag about but getting a second opinion may be useful. And perhaps getting a second CT/MRI of the aorta (or the second read) too. You have other things in good shape i.e. rest of your aorta including ascending is great. And your valve is not so bad either.

At your age, aorta can dilated at a greater rate, so will have to be closely monitored. Plus your lifestyle will also have to be managed (e.g. no heavy lifting or weight training etc).....

What you also want for your peace of mind is another factor too. All the best in decision making.

 

[pellicle]

Hi
and welcome aboard

Does anyone know the benefits to doing a repair first for a bicuspid (type 0) valve with mild to moderate regurgitation vs just a mechanical valve?

this is a bit out of my area of knowledge, but just based on what little I do know

• a repair is not a certainty to last
• depending how calcified it is it may not be viable

I had my bicuspid aortic valve 'repaired' (wasn't called that back then) and it lasted nearly 20 years. Importantly I was 10years old at surgery so it hadn't degraded as far as it could.

I think I could manage my INR with a mechanical valve.

I'm quite certain you could ... reach out when / if you go that way and I'll make your life easier with self management.

I am very active lifting 5x a week and otherwise healthy but my surgeon also said the mechanical valve isn’t guaranteed to last forever

nothing is ... but you'll likely have some other reason for intervention before a mechanical is the reason for that. I'd expect billions of beats (I'll leave that to you to work out the duration of that in years). I know that the devil is in the details but I'd say that from what I've read over the years (not just one source) my impression of "reasons for replacement of a mechanical valve would be (in no particular order):

• endocarditis
• obstruction due to thrombosis (chronic bad INR management)
• pannus formation (which is a type of tissue growth from inside the heart)
• aneurysm (which drove my previous OHS and you are now getting fixed)

actual mechanical valve failure is quite rare. I'd actually ask your surgeon to quantify what he means and make sure you're both on the same page of "what he meant when he said it" and "what you felt he meant".

https://www.sciencedirect.com/science/article/pii/S0735109700008342
{bold is mine}

by survival analysis at 15 years, all-cause mortality after AVR was lower with the mechanical valve versus bioprosthesis (66% vs. 79%, p = 0.02) but not after MVR. Primary valve failure occurred mainly in patients <65 years of age (bioprosthesis vs. mechanical, 26% vs. 0%, p < 0.001 for AVR and 44% vs. 4%, p = 0.0001 for MVR), and in patients ≥65 years after AVR, primary valve failure in bioprosthesis versus mechanical valve was 9 ± 6% versus 0%, p = 0.16. Reoperation was significantly higher for bioprosthetic AVR (p = 0.004). ​

I'll get back to repair stats

and with the type of bicuspid valve I have, the repair results are great.

data on that would be what I'd want ... and clear definitions of "great" ... because you're talking complex redo surgery when it goes and at 26 its likely to go in the next 50.

Google led me to here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8603241/

Putting on my "critical analysis" hat I saw the following problems

• a total of 206 patients [mean age: 44.5 ± 15.2 years; 152 males (74%)]
• mean follow-up of 5 ± 3.5 years
• Freedom from reoperation at 7 years reached 91.8%

given all that I can't see how (given you're 26) you can look forward with that data to project outcomes for longer than 7 years.

So, a really common job interview question: "where do you see yourself in 10 years"?

Also a really good word to know is "non-linear" ... failure is often non linear in these things. This graph should roughly explain that.

Best Wishes

 

[ncw3642]

If your valve itself is doing fine, could the "up to 5cm" aortic root be managed and closely monitored for the time-being? About 10 years ago, they revised aorta to be 5.5cm for BAV patients (given dilation of tissue is associated) before aorta by itself is warranted for surgery. If your valve was ALSO in a bad shape, then 5.0cm aorta is another qualifier for surgery.

Not trying to sway you one way or another, since 5cm aorta is not something to brag about but getting a second opinion may be useful. And perhaps getting a second CT/MRI of the aorta (or the second read) too. You have other things in good shape i.e. rest of your aorta including ascending is great. And your valve is not so bad either.

At your age, aorta can dilated at a greater rate, so will have to be closely monitored. Plus your lifestyle will also have to be managed (e.g. no heavy lifting or weight training etc).....

What you also want for your peace of mind is another factor too. All the best in decision making.

I did see that the 5.5 is the indication for surgery- 10-years ago. My surgeon is an "aortic specialist" and the current thinking according to him recent AHA/ACC guidelines support surgical intervention when the size reaches 5.0cm or if it grows more than .5cm/12 months. If the aneurysm is caused by AI (which mine is) the recommendation is 4.5cm. Because I have no other baseline combined with my BAV, he recommended replacement.

I think, for me, I would be more concerned with a potential rupture than just getting it repaired now when I am young and otherwise healthy. I am hoping the repair also lasts a while since I have no calcification. I also want to get back to weight training so I am hoping this repair allows that freedom.

 

[ncw3642]

Hi
and welcome aboard


this is a bit out of my area of knowledge, but just based on what little I do know

• a repair is not a certainty to last
• depending how calcified it is it may not be viable

I had my bicuspid aortic valve 'repaired' (wasn't called that back then) and it lasted nearly 20 years. Importantly I was 10years old at surgery so it hadn't degraded as far as it could.


I'm quite certain you could ... reach out when / if you go that way and I'll make your life easier with self management.



nothing is ... but you'll likely have some other reason for intervention before a mechanical is the reason for that. I'd expect billions of beats (I'll leave that to you to work out the duration of that in years). I know that the devil is in the details but I'd say that from what I've read over the years (not just one source) my impression of "reasons for replacement of a mechanical valve would be (in no particular order):

• endocarditis
• obstruction due to thrombosis (chronic bad INR management)
• pannus formation (which is a type of tissue growth from inside the heart)
• aneurysm (which drove my previous OHS and you are now getting fixed)

actual mechanical valve failure is quite rare. I'd actually ask your surgeon to quantify what he means and make sure you're both on the same page of "what he meant when he said it" and "what you felt he meant".

https://www.sciencedirect.com/science/article/pii/S0735109700008342
{bold is mine}

by survival analysis at 15 years, all-cause mortality after AVR was lower with the mechanical valve versus bioprosthesis (66% vs. 79%, p = 0.02) but not after MVR. Primary valve failure occurred mainly in patients <65 years of age (bioprosthesis vs. mechanical, 26% vs. 0%, p < 0.001 for AVR and 44% vs. 4%, p = 0.0001 for MVR), and in patients ≥65 years after AVR, primary valve failure in bioprosthesis versus mechanical valve was 9 ± 6% versus 0%, p = 0.16. Reoperation was significantly higher for bioprosthetic AVR (p = 0.004). ​

I'll get back to repair stats


data on that would be what I'd want ... and clear definitions of "great" ... because you're talking complex redo surgery when it goes and at 26 its likely to go in the next 50.

Google led me to here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8603241/

Putting on my "critical analysis" hat I saw the following problems

• a total of 206 patients [mean age: 44.5 ± 15.2 years; 152 males (74%)]
• mean follow-up of 5 ± 3.5 years
• Freedom from reoperation at 7 years reached 91.8%

given all that I can't see how (given you're 26) you can look forward with that data to project outcomes for longer than 7 years.

So, a really common job interview question: "where do you see yourself in 10 years"?

Also a really good word to know is "non-linear" ... failure is often non linear in these things. This graph should roughly explain that.
View attachment 890290
Best Wishes

Thank you for all this information, it's very helpful.

I think my thinking and my surgeons thinking is, since I have no calcification and the Type-0 valve type, it should last longer than 5-10 years. Although he did say it's a possibility of a sub-5 year failure. At which point even with a redo sternotomy (he is doing a mini with sternal plating this time) should be about equal risk to this first operation.

His reasoning for keeping the valve was to avoid any premature use of blood thinners and keeping my native valve. Since there should be little adhesions unlike if a mechanical valve would fail, he is confident in the viability of a second procedure even if mine (unlikely) lasts until I'm in my 50's+.

Of course, if he goes in and it's not repairable, the backup is a mechanical On-X valve, which I am at peace and more than fine with as well. Kinda going off his sample (anecdotal) of repairs and freedom from reoperation he has had so far. But it's a lot to think about. Mostly just glad the aneurysm is being repaired.

 

[minpin]

Last year, at age 55, I had BAV repair (type 1) + annulus stabilization + aortic replacement. I am still learning about it. From what I have read / heard, the benefits of repair are

- likely longer freedom of reoperation compared to bioprosthetic
- better quality of life (no drugs / limitations) compared to mechanical
- no impact on life expectancy
- as your surgeon said — if / when re-op is needed, it's not as big a deal as re-op after AVR

downsides are
- valve is still bicuspid, likely to fail in 20-30 years. I guess I see it as an incentive for me to do the best I can to stay healthy, knowing that another big surgery may be in my future.

As with all technologies, it seems like aortic valve repair has gotten better in recent years, both in terms of identifying patients for whom it is appropriate (no calcification, good leaflet pliability, no fenestrations in the leaflets) and technique. I know Cleveland Clinic is claiming some pretty good numbers at their center (I heard it on one of their podcasts, not published data), and they are expecting even better results in their "modern" cohort (2001-2011), but do not yet have long term data.

https://my.clevelandclinic.org/podc...cedure-repair-or-replace-with-root-management

Here is a 2019 retrospective review paper:

Bicuspid aortic valve repair: systematic review on long-term outcomes Ann Cardiothorac Surg. 2019 May; 8(3): 302–312.​

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6562085/

I just read about the AVIATOR initiative to track long term outcomes of aortic valve repair, so I hope there will be more information about aortic valve repair outcomes in the future.

If I am lucky enough to still be around and get 20-30 more years from my repaired valve, there will be even more knowledge & improved techniques for my next go-round. I consider that an upside as well.

 

[Deidra]

- no impact on life expectancy

Just wanted to chime in with this: https://www.annalsthoracicsurgery.org/article/S0003-4975(07)00667-4/fulltext

The recognition that patients with a bicuspid aortic valve (BAV) are at risk for aorta-related death (rupture or dissection) has favored composite aortic root replacement in BAV patients who undergo aortic valve replacement for valve dysfunction as well as in asymptomatic BAV patients with significant aortic root dilatation. We report the results of Bentall operations in 206 BAV patients during an 18-year interval.

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.

---

Although he did say it's a possibility of a sub-5 year failure.

downsides are
- valve is still bicuspid, likely to fail in 20-30 years. I guess I see it as an incentive for me to do the best I can to stay healthy, knowing that another big surgery may be in my future.

I think, for me at least, it comes down to how much of a gamble you are willing to make vs what tradeoffs you are willing to accept in your particular situation. With a bioprosthesis, and with repairs although maybe to a lesser degree, it's unclear how long it will last. If you get a mechanical valve, it will almost certainly last a lifetime. For me, the thing I valued most was only having 1 open heart surgery for my valve/aorta, and I did the thing that gives me the best chance of that. Never know if I might need a CABG later in life.

The only common limitation I hear is avoiding things like grapefruits and maybe cranberry juice (even then there are studies that show these things aren't a problem in moderation). Other than that, there aren't any absolute lifestyle limitations. A woman hiked to the top of Mt. Everest with a mechanical valve. Obviously you have to be diligent about your warfarin and INR. Compared to what most diabetics have to do, I think warfarin management is much easier.

---

Here's an interesting study: https://pubmed.ncbi.nlm.nih.gov/8469251/

To compare the outcomes of patients who receive these two types of valves, we randomly assigned 575 men scheduled to undergo aortic-valve or mitral-valve replacement to receive either a mechanical or a bioprosthetic valve.

There was a much higher rate of structural valve failure among patients who received bioprosthetic valves (11-year probability, 0.15 for the aortic valves and 0.36 for the mitral valves) than among those who received mechanical valves (no valve failures; P < 0.001). However, this difference was offset by a higher rate of bleeding complications among patients with mechanical valves than among those with bioprosthetic valves (11-year probability, 0.42 and 0.26, respectively; P < 0.001)

No valve failures in 11 years for any of the mechanical valve patients. Also notice the rate of bleeding complications for bioprosthetic valves is not 0.

In my view, structural deterioration of bioprosthesis (and native valve repairs) is something you don't have direct control over. It's kind of a shrug well I guess it'll happen when it happens moment. However, bleeding and clotting complications in mechanical valves are often driven by poor INR management/adherence. I've read in various studies that the average time in therapeutic range is something like 50-60%. Many people here spend more than 90% of their time in range. It's not unreasonable to infer that the rates of complications for people who spend 90%+ of their time in the range is much lower. It's something you do have at least some control over.

I see the appeal of a repair, and I think at the end of the day you should do what feels right to you. If you do end up getting many years out of the native valve, that's great, and it's certainly possible that you will. I'm not trying to sway you one way or the other, just sharing what I think/know about mechanical valves, and what I've experienced with one in the past month. I'm glad to hear that you are at peace with the alternative of a mechanical valve if it comes down to it once you're on the table.

 

[Survived03]

@ncw3642 I had a Tirone David V procedure back in 2003 to repair my aneurysm and clean us the BAV. I was 43 at the time and they only had 7 years of data on this procedure. My surgeon told me it could last 7 years , 10, 15 or lifetime. There was no way to tell. I was fortunate (almost to the month) that it lasted 20 years. Post surgery he did say I had an almost perfect bicuspid valve and only required some mild modification. However, I wouldn't necessarily bank on getting 20 years because there are numerous factors involved. You have to take in consideration the hemodynamic change once they replace the aortic root and the size of the graph plus the size of sinotubular junction, and blood pressure. All of these, and probably more, will have an impact on the valve itself. I must add that all of the surgery related procedure depends on the skill set and experience of the surgeon. I see you have California listed as your residence. I had my surgery at Stanford by Dr Craig Miller whom has since retired. However, they have surgeons that studied under Dr Miller and are exemplary with their skill sets.

I also happen recently uncovered that I have a low Lp(a) which perhaps contributed to lower calcification. I also went on a low dose statin post surgery as a precaution even though there was no data to support this approach. Maybe there is today but I'm not aware of any data.

In 2022 I went into severe stenosis and required a second OHS at Stanford in May of 2023 to replace the native valve. My surgeon was Dr. Michael Fischbein who ironically sat in on my aneurysm repair surgery 20 years earlier. I was 63 years old and opted to go for a bovine prosthetic Edwards Inspiris Resilia valve rather than a mechanical. I had individual reasons for going bio that are unrelated to my cardiothoracic condition. The surgeons will tell you that you could be a good candidate for valve in valve replacement via TAVR in the future. As many on this forum will opine, and I don't disagree, is that you really won't know if that is true until the day you may need a new valve. I was ok with taking that chance mostly driven by a quality of life decision for me. For what it's worth, the surgeon for my BAV replacement even suggested that a valve in valve in valve is a possibility later in life.

I provide this information to you not to persuade you in one direction or the other but to provide you my personal experience. You are 23, and obviously well versed in your condition. Are you in healthcare or studying medicine by chance? My only recommendation is to continue to do your research and ultimately you will make a decision that's right for you. A second, or third opinion doesn't hurt. If you want to chat some more or if there is anything else I can do to help please reach out. I wish you luck in your decision.

 

[ncw3642]

@ncw3642 I had a Tirone David V procedure back in 2003 to repair my aneurysm and clean us the BAV. I was 43 at the time and they only had 7 years of data on this procedure. My surgeon told me it could last 7 years , 10, 15 or lifetime. There was no way to tell. I was fortunate (almost to the month) that it lasted 20 years. Post surgery he did say I had an almost perfect bicuspid valve and only required some mild modification. However, I wouldn't necessarily bank on getting 20 years because there are numerous factors involved. You have to take in consideration the hemodynamic change once they replace the aortic root and the size of the graph plus the size of sinotubular junction, and blood pressure. All of these, and probably more, will have an impact on the valve itself. I must add that all of the surgery related procedure depends on the skill set and experience of the surgeon. I see you have California listed as your residence. I had my surgery at Stanford by Dr Craig Miller whom has since retired. However, they have surgeons that studied under Dr Miller and are exemplary with their skill sets.

I also happen recently uncovered that I have a low Lp(a) which perhaps contributed to lower calcification. I also went on a low dose statin post surgery as a precaution even though there was no data to support this approach. Maybe there is today but I'm not aware of any data.

In 2022 I went into severe stenosis and required a second OHS at Stanford in May of 2023 to replace the native valve. My surgeon was Dr. Michael Fischbein who ironically sat in on my aneurysm repair surgery 20 years earlier. I was 63 years old and opted to go for a bovine prosthetic Edwards Inspiris Resilia valve rather than a mechanical. I had individual reasons for going bio that are unrelated to my cardiothoracic condition. The surgeons will tell you that you could be a good candidate for valve in valve replacement via TAVR in the future. As many on this forum will opine, and I don't disagree, is that you really won't know if that is true until the day you may need a new valve. I was ok with taking that chance mostly driven by a quality of life decision for me. For what it's worth, the surgeon for my BAV replacement even suggested that a valve in valve in valve is a possibility later in life.

I provide this information to you not to persuade you in one direction or the other but to provide you my personal experience. You are 23, and obviously well versed in your condition. Are you in healthcare or studying medicine by chance? My only recommendation is to continue to do your research and ultimately you will make a decision that's right for you. A second, or third opinion doesn't hurt. If you want to chat some more or if there is anything else I can do to help please reach out. I wish you luck in your decision.

Thank you so much for your response, so glad to hear you had so much time with your repair and things are going well now post-replacement.

I would say that I'm certainly not "expecting" 20-years out of the repair, but given I am 26 now, I will still be "young" when/if they have to do a second procedure to replace the repair with a mechanical. Maybe in 5, 10, whatever years there will be an even better mechanical valve version or techniques available, and this procedure buys me a bit of time.

I am actually based in the Midwest (Missouri), but I have access to a great hospital system with a great heart center and my surgeon is the go-to guy for mild or complex aortic valve cases- so I hope his technique is also sound.

I am actually in the healthcare field as a physical therapist and I work in the hospital I will be having surgery in- with the cardiothoracic surgery patients so I see their recovery (at least acutely) daily. While things always do pop-up, most do fairly well, and the younger they are, the lower of complications that arise.

 

[Deidra]

I am actually in the healthcare field as a physical therapist and I work in the hospital I will be having surgery in- with the cardiothoracic surgery patients so I see their recovery (at least acutely) daily. While things always do pop-up, most do fairly well, and the younger they are, the lower of complications that arise.

This is amazing btw. You've seen the recovery happen first hand so many times! PTs do invaluable work. It was very nice to see the physical therapist when they came by during my stay.

My only complication in the hospital was some tachycardia/arrhythmias. Not the dangerous kind but the annoying kind. They said it would probably go away within a month and it has.

 

[Survived03]

I am actually based in the Midwest (Missouri), but I have access to a great hospital system with a great heart center and my surgeon is the go-to guy for mild or complex aortic valve cases- so I hope his technique is also sound.

https://health.usnews.com/best-hospitals/area/mo

Cool. Not sure why I thought California but you have some great institutions in Missouri. Good luck and Go Cardinals! (my team). And thank you for all that you do in PT.

 

[minpin]

@Survived03, thank you so much for sharing your experience. It is helpful for me to have someone’s real life experience vs probabilities and statistics. I have a question about calcification / stenosis of your repaired valve — the stenosis occured even with little calcification? Do you know the cause of the stenosis? Please forgive me if I misunderstood your post or the cause of stenosis… I am still learning and often need things spelled out very clearly.

BTW I am not advocating for repair, just sharing some things I have read / heard and am finding this discussion very illuminating. I too was very pro mechanical going in to surgery for personal reasons. It’s very true that there is a lot of uncertainty with repair — if / when it will fail, and thoughts following that train of thought were what made me favor mechanical, even tho I ended up getting a repair.

I do feel optimistic about my repair tho, having gone 55 years prior to surgery without stenosis or calcification.

Fyi I thought this was interesting— a paper on what causes valve failure. A lot of reasons biological valves fail do not apply to native valves.
https://www.ahajournals.org/doi/10.1161/JAHA.120.018506

 

[Survived03]

I have a question about calcification / stenosis of your repaired valve — the stenosis occured even with little calcification? Do you know the cause of the stenosis?

The post surgical exam demonstrated "sclerotic and thickened leaflets". So there was signs of calcification. I hope I haven't given the impression my valve did not show calcification. However, upon additional imaging I had very clear coronary arteries and some slight calcification in the descending aorta near the arch and in the abdomen.

The cause of the stenosis? Living life

 

[minpin]

The post surgical exam demonstrated "sclerotic and thickened leaflets". So there was signs of calcification. I hope I haven't given the impression my valve did not show calcification. However, upon additional imaging I had very clear coronary arteries and some slight calcification in the descending aorta near the arch and in the abdomen.

The cause of the stenosis? Living life

thanks for the clarification! cheers to life!!

 

[pellicle]

Hi

At which point even with a redo sternotomy (he is doing a mini with sternal plating this time) should be about equal risk to this first operation.

this is logical and correct (although I take issue with the veracity of mini and redo and sternal plating). This next point is something I've said here more than once

His reasoning for keeping the valve was to avoid any premature use of blood thinners and keeping my native valve.

its my view that 26yo'lds are in general unsuited to properly managing their INR (there are notable exceptions). I personally am glad that at 28 I had a homograft for my second OHS and deferred ACT (or as you say blood thinners; which incidentally is wrong as no thinning occurs) until later.

My caveat to that is that when I was 28 there was no coaguchek or any "point of care" monitoring of INR and indeed the INR system wasn't widely in use and we were still using a far less exact measurement called Prothrombin Time (PT) and had to do calculations with reagents to work out what the hell that meant. Now we still use PT (where T is time in seconds) as the underlying mechanism of INR; the R is Ratio.

Now however we have these machines and I and many others use them in the same way diabetics use Blood Glucose Monitors to ensure they have a healthy level of blood sugar.

Its convenient, its easy and its accurate.

Just wanted to add those clarifications for your information (for your making of an informed decision).

 

[ncw3642]

Hi



this is logical and correct (although I take issue with the veracity of mini and redo and sternal plating). This next point is something I've said here more than once


its my view that 26yo'lds are in general unsuited to properly managing their INR (there are notable exceptions). I personally am glad that at 28 I had a homograft for my second OHS and deferred ACT (or as you say blood thinners; which incidentally is wrong as no thinning occurs) until later.

My caveat to that is that when I was 28 there was no coaguchek or any "point of care" monitoring of INR and indeed the INR system wasn't widely in use and we were still using a far less exact measurement called Prothrombin Time (PT) and had to do calculations with reagents to work out what the hell that meant. Now we still use PT (where T is time in seconds) as the underlying mechanism of INR; the R is Ratio.
View attachment 890292

Now however we have these machines and I and many others use them in the same way diabetics use Blood Glucose Monitors to ensure they have a healthy level of blood sugar.

Its convenient, its easy and its accurate.

Just wanted to add those clarifications for your information (for your making of an informed decision).

Thank you!

this is logical and correct (although I take issue with the veracity of mini and redo and sternal plating). This next point is something I've said here more than once

I actually did somewhat mispeak on this topic. He did say that a redo-mini does increase the risk from 1% to ~1.5-2% but still marginal enough to justify potentially having a second surgery. I did tell my surgeon that if he is in the procedure and the repair he attempts does not seem viabile to last (in his judgement) >5-10 years to just go ahead and do a mechanical replacement as I am fine with the risk of a repeat, but not sooner than that point (I think).

There really isn't a "bad" judgement call due to the low risk- and I agree fully with you, managing the INR is something I am NOT worried about, especially with all the advancements.

 

[AZ Don]

FYI,
I had a valve sparing root and ascending aneurysm repair just over 11 years ago when I was 51. The valve was well functioning so I was given the valve sparing option and not knowing much about all of this I went with "If it ain't broke, don't fix it". My valve started leaking after the surgery and progressed from mild to moderate over the course of a year, but it stabilized and hasn't gotten worse since. Knowing what I know now I would probably lean mechanical but it's a difficult choice and both options are very good. You will almost certainly have better options available in the future.