25 year old male in US with BAV/aneurysm

[Josh-779]

I am a 25 year old male from the US. I have a bicuspid aortic valve with mild regurgitation and moderate stenosis. I take lisinopril for high blood pressure (which is currently under control) and Zoloft for anxiety.

I recently had an echocardiogram that noted moderate stenosis followed up by a CT scan that noted the aneurysm. The results of the CT scan and echo are posted below.

For symptoms, I have had mild chest pain for the past 2 months or so, and shortness of breath and dizziness after about 5-10 minutes of moderate exercise such as jogging. I also have persistent fatigue and mild arm pain.

I have a few questions for you all.

1. Valve Choice: I’ve already read quite a bit about choices between valve types here and looking through research papers. I’ve generally focused into looking at mechanical valve vs Ross. I first strongly leaned towards the Ross but reading the experiences on here have really helped. Most studies I’ve read have indicated reduced life expectancy for young adults receiving a mechanical valve, but other studies have indicated a similar life expectancy to the general population with proper INR management. I don’t think I would have any problems with the valve noise as I am
an extremely heavy sleeper and background noise doesn’t bother me. With the Ross, I am certain to have reoperation in the future, but I’m still drawn to cohort matched studies showing a comparable life expectancy to the general population for young adults (including a valve replacement age similar to my own).

2. When to operate: My cardiologist told me that while no immediate surgery is needed, I may be looking at surgery within a few years. I’m inclined to get surgery earlier rather than later, as moderate stenosis is also associated with elevated mortality and reduced left ventricular function. Should I get surgery soon or wait until the stenosis becomes severe or the aneurysm grows larger?

3 Life expectancy: Does anyone know how aortic aneurysm repair affects long term life expectancy in young adults? I haven’t found a whole lot of information out there relating to people my age for this.

Thank you all for your time!!!

CT scan:

Heart size is within normal limits. No pericardial effusion. No significant mediastinal, hilar, or axillary lymphadenopathy. Thyroid gland is symmetric.

There is a prominent ascending thoracic aortic aneurysm measuring 4.1 cm AP by 4.2 cm transverse. This does not appear to extend into the aortic root. There is a three-vessel branching aortic arch which appears widely patent. The descending thoracic aorta is normal in caliber measuring 1.9 cm AP by 2.1 cm transverse. No evidence of thoracic aortic dissection.

The lungs are clear of focal consolidation, pneumothorax or pleural effusion. Trachea and mainstem bronchi are patent.

Images of the upper abdomen show no free fluid. Mild fatty infiltration of the liver. The gallbladder, spleen, pancreas, and adrenal glands are unremarkable. The kidneys enhance symmetrically bilaterally. Abdominal aorta is nonaneurysmal. No free fluid. There is mild asymmetric elevation of the left hemidiaphragm.

Bone windows show no acute bony abnormality.

ECHO:

Normal left ventricular size. Normal left ventricular systolic function with ejection fraction 60-65%. Normal left ventricular diastolic function. Normal right ventricular size and systolic function. Aortic valve is not well visualized. Moderate aortic stenosis with peak aortic velocity 3.4 m/sec, mean gradient 24 mm Hg and calculated aortic valve area 1.3 centimeter squared. Mild-to-moderate aortic regurgitation. Aortic regurgitation is eccentric directed posteriorly against the anterior mitral leaflet.

 

[pellicle]

Hi Josh and welcome

I recently had an echocardiogram that noted moderate stenosis followed up by a CT scan that noted the aneurysm. The results of the CT scan and echo are posted below.

I'm not skilled at interpreting those so I'll leave that for you and your team. To be honest they really do know best

For symptoms, I have had mild chest pain for the past 2 months or so, and shortness of breath and dizziness after about 5-10 minutes of moderate exercise such as jogging. I also have persistent fatigue and mild arm pain.

then it sounds like you're close, that's great, as then you can get it fixed and move on. You can read about me in my Bio but basically I had my first OHS at about 10 (a repair) my second at about 28 (somebody elses) and my third at 48 where I got a mechanical and they fixed an aneurysm with a graft. That was just over 10 years ago now.

ok ... so

1. Valve Choice: I’ve already read quite a bit about choices between valve types here and looking through research papers. I’ve generally focused into looking at mechanical valve vs Ross. I first strongly leaned towards the Ross but reading the experiences

I'm pretty well known for having a few issues with the Ross (well, lets just start here) and would ask you to (after you've read that) tell me why you're leaning to a valve surgery which you begin with one diseased valve and then end up with two. This will only serve to further complicate further surgeries (and to be frank at your age they are somewhat likely, even though you are getting the aneurysm fixed which is really good).

Most studies I’ve read have indicated reduced life expectancy for young adults receiving a mechanical valve, but other studies have indicated a similar life expectancy to the general population with proper INR management.

bingo ... and we can sure help you with that aspect. Also notice how few studies look past 10 years?

Now, I'll also suggest you grab a coffee and a notepad and view this presentation (from the Mayo)

2. When to operate: My cardiologist told me that while no immediate surgery is needed, I may be looking at surgery within a few years. I’m inclined to get surgery earlier rather than later, as moderate stenosis is also associated with elevated mortality and reduced left ventricular function.

myself I tend to agree with your view ... consider a second opinion and discuss that exact point (that I underlined)
Should I get surgery soon or wait until the stenosis becomes severe or the aneurysm grows larger?

3 Life expectancy: Does anyone know how aortic aneurysm repair affects long term life expectancy in young adults? I haven’t found a whole lot of information out there relating to people my age for this.

well anecdotally having it repaired really extends your life compared to not knowing it was there and then suddenly dying. Since you'll now be monitored over time for some time to come (I go for checkups about every 2 years (more or less) and so if anything like that emerges (unlike the general public) we'll get notice.

Sounds like you're on the right path to making an informed decision.

Best Wishes

 

[ValveAdmin]

Hello Josh, welcome to the forum, and thanks for joining. All the best to you.

 

[Josh-779]

Thank your for your detailed reply, Pellicle. I will take some time to read over what you sent me and reply tomorrow. It is getting late over where I am.

 

[pellicle]

Pellicle. I will take some time to read over what you sent me and reply tomorrow.

All good, take your time and expect to change your mind more than once as you get across everything

I expect you'll also get some other views, more views and more conversations and you're more likely to find exactly what you want.

Best Wishes

 

[Croooser]

Hi Josh,

A few thoughts:

With tests indicating both the valve and the aneurysm at mild to moderate, it may be sooner or later when your condition progresses to the point that you become a candidate for surgery. Everyone is different and the rate of progression varies from person to person. I think that finding a good cardiologist who puts you on a regular test schedule to monitor changes is considered best practice.

While I was waiting to go from a 1.8 AVA and a 4.7 ascending aortic aneurysm, I also had the thought that I would just like to get the surgery and put it behind me. But the Doctors that I dealt with educated me on the fact that there are pretty well defined test results that have been determined to be the point to perform surgery. There appears to be a little bit of difference of opinion, but a fairly narrow range. For me, it was good advice, since it took 18 years to get to a .9 AVA and a 5.1 aneurysm. The annual CT scan and echo kept me informed and gave me piece of mind. Also, with both conditions, they may recommend surgery a little sooner. Finally, one cardiologist that I consulted with was much more concerned with symptoms than test results because blocked arteries must be considered as well.

The prevailing wisdom would say mechanical valve at your age. However, if you have years to go before surgery, the available options will likely be different down the road.

The best advice that I have seen on this forum is to find Doctors that are knowledgeable, and that you trust, and that demonstrate that they care about you and your health. If they meet your criteria, they will partner with you. If they don't meet your criteria, replace them.

HTH

 

[Josh-779]

Hi Josh and welcome



I'm not skilled at interpreting those so I'll leave that for you and your team. To be honest they really do know best

then it sounds like you're close, that's great, as then you can get it fixed and move on. You can read about me in my Bio but basically I had my first OHS at about 10 (a repair) my second at about 28 (somebody elses) and my third at 48 where I got a mechanical and they fixed an aneurysm with a graft. That was just over 10 years ago now.

ok ... so

I'm pretty well known for having a few issues with the Ross (well, lets just start here) and would ask you to (after you've read that) tell me why you're leaning to a valve surgery which you begin with one diseased valve and then end up with two. This will only serve to further complicate further surgeries (and to be frank at your age they are somewhat likely, even though you are getting the aneurysm fixed which is really good).

To address some of the points made in your blog post:

1. dependence on surgeon quality: While it is true that surgical quality can vary considerably, if I choose the Ross I would plan to get the Ross done at Cleveland Clinic or Mt Sinai, with surgeons who have performed hundreds of procedures and have shown good results in terms of operation survival and length of time before re-intervention.
2. Exclusion criteria (This is one concern I have with Ross and it’s definitely a good point you bring up): In the Ross, the pulmonary autograft may develop dilation over time in patients with BAV. This is something I will need to discuss with my surgeon.

3. The shortage of homografts are alleviated by ability to use tissue valves from pigs.

I’ve heard that you can’t use those same valves in aortic position due to increased demand in that position. Most studies I’ve seen suggest some reoperation of homografts in the pulmonary position but lower than reoperation in the aortic position (primarily due to lower demand in this position compared to aortic.) This is a major concern I have with the Ross (especially as the homograft and autograft will probably need reintervention at different time periods).

Now to provide some reasons why I was considering the Ross:

1. Lower risk of endocarditis (Although one study mentioned in the video you shared showed similar rates, so this point is inconclusive)

https://www.ahajournals.org/action/....022800&file=022800_supplemental_material.pdf

2. Better hemodynamics

Hemodynamic outcomes of the Ross procedure versus other aortic valve replacement: a systematic review and meta-analysis - The Journal of Cardiovascular Surgery 2018 June;59(3):462-70

3. New techniques increase freedom from intervention to 87% at 20 years with Ross (Although these techniques are limited to certain centers and have exclusion criteria, which is mentioned in your blog post)

https://www.ahajournals.org/action/....022800&file=022800_supplemental_material.pdf

4. The issue of INR management and longevity.

Although some studies have shown a return to normal life expectancy with proper INR management, other studies do not show that even with proper INR management and I don’t think this question is fully resolved. If you have more information on this issue I would be glad to read it.

1. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.110.947341. This study (Mokhles et. al) shows slightly higher survival for mechanical valve patients with optimal INR management but only occurs over a follow up of about 6 years. One study (Mazine et. al) shows survival difference being largest at >15 years in favor of the Ross (https://www.ahajournals.org/doi/10.1161/circulationaha.116.022800)

From Mohkles:

Mean follow up is also greater in Mazine et. al at about 14 years (https://www.ahajournals.org/doi/10.1161/circulationaha.116.022800). Furthermore, Mokhles states that selection bias may occur due to patients being conscientious enough to be able to control their INR may have other good health practices. This makes me question the generalizability of these results, although they do certainly give reason for optimisim

I will go over some studies that gave me pause in regards to self INR management:

Self-monitoring of oral anticoagulation: systematic review and meta-analysis of individual patient data - PubMed

Participants younger than 55 years showed a striking reduction in thrombotic events (hazard ratio 0·33, 95% CI 0·17-0·66), as did participants with mechanical heart valve (0·52, 0·35-0·77). Analysis of major outcomes in the very elderly (age ≥85 years, n=99) showed no significant adverse effects of the intervention for all outcomes.

https://www.ahajournals.org/action/....022800&file=022800_supplemental_material.pdf

While this is a very good result from self INR monitoring, bleeding events were still lower within the Ross group. While INR management greatly reduces the risk of bleeding events or stroke, it does not reduce it to levels seen in Ross patients.

Additionally, this study (Matchar et. al) shows little difference in events for monthly lab testing vs weekly self testing, although may not be genealizable due to the short follow up time and older patient age. (https://www.nejm.org/doi/full/10.1056/nejmoa1002617)

Finally, I’ve viewed some Q&A sessions on valve replacement. At about the 3:12 mark with this one from Dr. Hanneke Takkenberg, she talks about relative life expectancy being lower in younger patients with mechancial valves. While some research indicates this difference is reduced or goes away with optimal INR management, I think it’s hard to conclude that when some experts in the field continue to state that young people with mechanical valves have lower relative life exppectancies.



[/QUOTE]

bingo ... and we can sure help you with that aspect. Also notice how few studies look past 10 years?

[/QUOTE]
This is definitely frustrating, as well as the lack of matched cohort studies and lack of studies looking at young adults that don’t define young adults as all adults <65 years old.
[/QUOTE]

Now, I'll also suggest you grab a coffee and a notepad and view this presentation (from the Mayo)



[/QUOTE]

Overall, this video had a lot of good information, but had more comparisons between mechanical and tissue in general. I am not considering tissue valves apart from the Ross, so I don’t know how comparable the studies shown are. Also, it seemed to focus more on the 55-70 year old age group as that is where most of the discussion on mechanical vs. tissue is occuring. The information on self monitoring of INR at the end was very helpful.



myself I tend to agree with your view ... consider a second opinion and discuss that exact point (that I underlined)
Should I get surgery soon or wait until the stenosis becomes severe or the aneurysm grows larger?

[/QUOTE]

I will make sure to discuss this with my surgeon.

[/QUOTE]

well anecdotally having it repaired really extends your life compared to not knowing it was there and then suddenly dying. Since you'll now be monitored over time for some time to come (I go for checkups about every 2 years (more or less) and so if anything like that emerges (unlike the general public) we'll get notice.

[/QUOTE]

This is definitely true and a more positive way to look at it. I suppose I’m fairly pessimistic in general (as well as having pretty bad health anxiety). I’m just mostly afraid of dying and the concept of not existing any more, which is why I’m so fixates on long term survival. I’ve seen some information on stoicism that you’ve shared in your prior posts, and I’m trying not to worry about things I can’t control but I find it fairly difficult. I’ve read some Marcus Aurelius in the past but I may have to read Meditations again.

[/QUOTE]

Sounds like you're on the right path to making an informed decision.

[/QUOTE]
Thank you again for your response. It’s clear you spend a lot of time helping people here and it’s a great service to people just discovering they may need valve surgery. I also want to apologize to anyone reading this for the formatting issues. I’m sure I’ll get the hang of it soon.
[/QUOTE]

Best Wishes
[/QUOTE]

Thank you,
Josh

 

[Josh-779]

Hi Josh,

A few thoughts:

With tests indicating both the valve and the aneurysm at mild to moderate, it may be sooner or later when your condition progresses to the point that you become a candidate for surgery. Everyone is different and the rate of progression varies from person to person. I think that finding a good cardiologist who puts you on a regular test schedule to monitor changes is considered best practice.

While I was waiting to go from a 1.8 AVA and a 4.7 ascending aortic aneurysm, I also had the thought that I would just like to get the surgery and put it behind me. But the Doctors that I dealt with educated me on the fact that there are pretty well defined test results that have been determined to be the point to perform surgery. There appears to be a little bit of difference of opinion, but a fairly narrow range. For me, it was good advice, since it took 18 years to get to a .9 AVA and a 5.1 aneurysm. The annual CT scan and echo kept me informed and gave me piece of mind. Also, with both conditions, they may recommend surgery a little sooner. Finally, one cardiologist that I consulted with was much more concerned with symptoms than test results because blocked arteries must be considered as well.

The prevailing wisdom would say mechanical valve at your age. However, if you have years to go before surgery, the available options will likely be different down the road.

The best advice that I have seen on this forum is to find Doctors that are knowledgeable, and that you trust, and that demonstrate that they care about you and your health. If they meet your criteria, they will partner with you. If they don't meet your criteria, replace them.

HTH

Thank you for your advice. I’m hoping that my stenosis progression and aneurysm growth are slow, but my stenosis has progressed quite a bit from 1 year ago (it was mild then). I’ve seen studies showing anywhere from a 1-5% risk of rupture for thoracic aortic aneurysms 4-5 cm in size, and that’s primarily what’s driving me to want early surgery, but I will make sure to discuss this with my cardiologist. I have had some chest and back pain, shortness of breath upon exertion, and some palpitations, but my cardiologist doesn’t think the back and chest pain is related to the stenosis or aneurysm.

Thank you,
Josh

 

[pellicle]

Thank you,
Josh

all good josh, there was some weird stuff happening in the reply ... making the quotes go out of order ... perhaps it was caused by an attempt at nested quotes. I don't know.

you mentioned:

he shortage of homografts are alleviated by ability to use tissue valves from pigs.

well be very careful to then look at ONLY data about "Ross" which is with a xenograft in the pulmonary position ... and factor that in with your age.

also

Dr. Hanneke Takkenberg, she talks about relative life expectancy being lower in younger patients with mechancial valves

be careful what you understand when people say "younger patients"

and also just be looking for data from proper peer reviewed sites. The Heart Foundation (for instance is a business not a science institution) and think about not the 10 year outcome, but the 20 and 30 and 40 year outcomes.

We have people here who have been on warfarin for over 40 years, so it can be done (and its usually not warfarin which kills you).

Like Dr Schaff observs, reoperation is not trivial and brings risks. People largely only focus on "death" ... well there are other things less exaggerated but that can be annoying (like endo like being on a pacemaker ...).



One day you may actually find yourself approaching 60.

Best Wishes

 

[Josh-779]

Thank you for your reply. Finding sources for my specific age and situation using cohort matching with long term follow up has been difficult, but I have found some cohort matched studies with a mean age of 37 that showed positive longevity results for mechanical valves. I will have to keep looking into research and discuss with a surgeon and my cardiologist.

 

[pellicle]

Finding sources for my specific age and situation using cohort matching with long term follow up has been difficult,

exactly my point and exactly why I say 'be careful in just swallowing the kool-aid'

but I have found some cohort matched studies with a mean age of 37 that showed positive longevity results for mechanical valves.

that's exactly what I would expect.

You know Arnie had a Ross and then had to have both of the valves fixed too right? I mean I'm sure he had access to a good surgeon and all.

https://www.heart-valve-surgery.com/arnold-schwarzenegger.php
meanwhile the mechanical valve just continues to deliver known long term results
https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749

I will have to keep looking into research and discuss with a surgeon and my cardiologist.

I would listen to them and then discuss things here ... to my mind when I read your post you're asking the specialist questions about the components of the salad dressing but ignoring the big picture.

1. you want less surgeries not more
2. you want a valve that will for sure last longer than 20 years (the longer the better

Try reading this guys posts
https://www.valvereplacement.org/members/superman.6979/#about
(sorry @Superman , I thought I'd finger you)

I mean sometimes the obvious answer it the right one. If it was me and if I knew at 25 what I know now, had access to INR equipment available now when I was 28 and was having an aneurysm fixed at the same time I'd take mechanical with both hands.

I've got annoying dysphagia issues (not life threatening, just annoying) from being intubated probably at least 3 times too many (and I got intubated 3 times between November 2011 and Feb 2013 for surgery and then debridements dealing with post surgical infections.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264700/
its a real thing and among the long list of "that'll give you issues" that cardiac surgeons don't even rate mentioning.

Best Wishes

 

[Superman]

I’ve been fingered.

Welcome to the forum Josh. Not too many your age and younger here. Hit me with any questions you might have. I’ve had a mechanical valve since I was 17 (I turned 18 in the hospital - they couldn’t wait one week!?!). I’m 49 now, so coming up on 32 years of ticking popping pills. I’ve been on warfarin longer than I’ve been allowed to vote.

So far so good. Married to an amazing woman. We have five great kids. I still run and bike. We travel and hike the National Parks. I had an aneurysm as well, but it didn’t show up until I was 36, so that was my second open heart surgery. I’m confident it would have been one and done if the aneurysm was present the first time.

Whatever you decide to do, it will be the right decision for you. Don’t discount the sleep at night test. If you’re not comfortable with your decision, it’s a recipe for future anxiety.

 

[Josh-779]

I’ve been fingered.

Welcome to the forum Josh. Not too many your age and younger here. Hit me with any questions you might have. I’ve had a mechanical valve since I was 17 (I turned 18 in the hospital - they couldn’t wait one week!?!). I’m 49 now, so coming up on 32 years of ticking popping pills. I’ve been on warfarin longer than I’ve been allowed to vote.

So far so good. Married to an amazing woman. We have five great kids. I still run and bike. We travel and hike the National Parks. I had an aneurysm as well, but it didn’t show up until I was 36, so that was my second open heart surgery. I’m confident it would have been one and done if the aneurysm was present the first time.

Whatever you decide to do, it will be the right decision for you. Don’t discount the sleep at night test. If you’re not comfortable with your decision, it’s a recipe for future anxiety.

Thank you for sharing your story. It’s definitely reassuring to hear from other people who have had positive experiences.

 

[pellicle]

I’ve been fingered.

think of it more as gentle rimming with my nails neatly trimmed...

coming up on 32 years of ticking popping pills.

reminds me of a joke about truck drivers involving a mother seeing her little boy playing by eating tic tacs and licking the cat....

 

[cldlhd]

I am a 25 year old male from the US. I have a bicuspid aortic valve with mild regurgitation and moderate stenosis. I take lisinopril for high blood pressure (which is currently under control) and Zoloft for anxiety.

I recently had an echocardiogram that noted moderate stenosis followed up by a CT scan that noted the aneurysm. The results of the CT scan and echo are posted below.

For symptoms, I have had mild chest pain for the past 2 months or so, and shortness of breath and dizziness after about 5-10 minutes of moderate exercise such as jogging. I also have persistent fatigue and mild arm pain.

I have a few questions for you all.

1. Valve Choice: I’ve already read quite a bit about choices between valve types here and looking through research papers. I’ve generally focused into looking at mechanical valve vs Ross. I first strongly leaned towards the Ross but reading the experiences on here have really helped. Most studies I’ve read have indicated reduced life expectancy for young adults receiving a mechanical valve, but other studies have indicated a similar life expectancy to the general population with proper INR management. I don’t think I would have any problems with the valve noise as I am
an extremely heavy sleeper and background noise doesn’t bother me. With the Ross, I am certain to have reoperation in the future, but I’m still drawn to cohort matched studies showing a comparable life expectancy to the general population for young adults (including a valve replacement age similar to my own).

2. When to operate: My cardiologist told me that while no immediate surgery is needed, I may be looking at surgery within a few years. I’m inclined to get surgery earlier rather than later, as moderate stenosis is also associated with elevated mortality and reduced left ventricular function. Should I get surgery soon or wait until the stenosis becomes severe or the aneurysm grows larger?

3 Life expectancy: Does anyone know how aortic aneurysm repair affects long term life expectancy in young adults? I haven’t found a whole lot of information out there relating to people my age for this.

Thank you all for your time!!!

CT scan:

Heart size is within normal limits. No pericardial effusion. No significant mediastinal, hilar, or axillary lymphadenopathy. Thyroid gland is symmetric.

There is a prominent ascending thoracic aortic aneurysm measuring 4.1 cm AP by 4.2 cm transverse. This does not appear to extend into the aortic root. There is a three-vessel branching aortic arch which appears widely patent. The descending thoracic aorta is normal in caliber measuring 1.9 cm AP by 2.1 cm transverse. No evidence of thoracic aortic dissection.

The lungs are clear of focal consolidation, pneumothorax or pleural effusion. Trachea and mainstem bronchi are patent.

Images of the upper abdomen show no free fluid. Mild fatty infiltration of the liver. The gallbladder, spleen, pancreas, and adrenal glands are unremarkable. The kidneys enhance symmetrically bilaterally. Abdominal aorta is nonaneurysmal. No free fluid. There is mild asymmetric elevation of the left hemidiaphragm.

Bone windows show no acute bony abnormality.

ECHO:

Normal left ventricular size. Normal left ventricular systolic function with ejection fraction 60-65%. Normal left ventricular diastolic function. Normal right ventricular size and systolic function. Aortic valve is not well visualized. Moderate aortic stenosis with peak aortic velocity 3.4 m/sec, mean gradient 24 mm Hg and calculated aortic valve area 1.3 centimeter squared. Mild-to-moderate aortic regurgitation. Aortic regurgitation is eccentric directed posteriorly against the anterior mitral leaflet.

I have also thought about aneurysm repair, they give you a nice cartoon drawing that makes it look nice and neat But something tells me it's a little messier...., and life expectancy and if it's affected but the reality is once it gets to a certain size If you don't get the surgery, your life expectancy will be drastically shorter on average. At your age with the aneurysm and it appears your valve will need to be replaced. I would personally choose a mechanical valve with the graft already attached. I'm not a surgeon or even a doctor of any sort, but I looked into the same things when I had my surgery 7 years ago. I don't have any stenosis of the valve, at least I did it two years ago at last check, and my valve flows well and doesn't leak so they kept it but I had my aneurysm replaced.
As for surgeons, everybody has a preference I guess, and there are a lot of great ones, I had doctor Joseph Bavaria from the hospital to University of Pennsylvania and apparently he's a pretty big shot in the field, just ask him he'll tell you.... But seriously he did do a great job on me. Others out here will have more expertise in me, but that's just my two cents.

 

[cldlhd]

To address some of the points made in your blog post:

1. dependence on surgeon quality: While it is true that surgical quality can vary considerably, if I choose the Ross I would plan to get the Ross done at Cleveland Clinic or Mt Sinai, with surgeons who have performed hundreds of procedures and have shown good results in terms of operation survival and length of time before re-intervention.
2. Exclusion criteria (This is one concern I have with Ross and it’s definitely a good point you bring up): In the Ross, the pulmonary autograft may develop dilation over time in patients with BAV. This is something I will need to discuss with my surgeon.

3. The shortage of homografts are alleviated by ability to use tissue valves from pigs.
View attachment 888457
I’ve heard that you can’t use those same valves in aortic position due to increased demand in that position. Most studies I’ve seen suggest some reoperation of homografts in the pulmonary position but lower than reoperation in the aortic position (primarily due to lower demand in this position compared to aortic.) This is a major concern I have with the Ross (especially as the homograft and autograft will probably need reintervention at different time periods).

Now to provide some reasons why I was considering the Ross:

1. Lower risk of endocarditis (Although one study mentioned in the video you shared showed similar rates, so this point is inconclusive)

https://www.ahajournals.org/action/downloadSupplement?doi=10.1161/CIRCULATIONAHA.116.022800&file=022800_supplemental_material.pdf

2. Better hemodynamics

Hemodynamic outcomes of the Ross procedure versus other aortic valve replacement: a systematic review and meta-analysis - The Journal of Cardiovascular Surgery 2018 June;59(3):462-70

3. New techniques increase freedom from intervention to 87% at 20 years with Ross (Although these techniques are limited to certain centers and have exclusion criteria, which is mentioned in your blog post)

https://www.ahajournals.org/action/downloadSupplement?doi=10.1161/CIRCULATIONAHA.116.022800&file=022800_supplemental_material.pdf

4. The issue of INR management and longevity.

Although some studies have shown a return to normal life expectancy with proper INR management, other studies do not show that even with proper INR management and I don’t think this question is fully resolved. If you have more information on this issue I would be glad to read it.

1. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.110.947341. This study (Mokhles et. al) shows slightly higher survival for mechanical valve patients with optimal INR management but only occurs over a follow up of about 6 years. One study (Mazine et. al) shows survival difference being largest at >15 years in favor of the Ross (https://www.ahajournals.org/doi/10.1161/circulationaha.116.022800)

From Mohkles:
View attachment 888458
Mean follow up is also greater in Mazine et. al at about 14 years (https://www.ahajournals.org/doi/10.1161/circulationaha.116.022800). Furthermore, Mokhles states that selection bias may occur due to patients being conscientious enough to be able to control their INR may have other good health practices. This makes me question the generalizability of these results, although they do certainly give reason for optimisim

I will go over some studies that gave me pause in regards to self INR management:

Self-monitoring of oral anticoagulation: systematic review and meta-analysis of individual patient data - PubMed

Participants younger than 55 years showed a striking reduction in thrombotic events (hazard ratio 0·33, 95% CI 0·17-0·66), as did participants with mechanical heart valve (0·52, 0·35-0·77). Analysis of major outcomes in the very elderly (age ≥85 years, n=99) showed no significant adverse effects of the intervention for all outcomes.

https://www.ahajournals.org/action/downloadSupplement?doi=10.1161/CIRCULATIONAHA.116.022800&file=022800_supplemental_material.pdf

While this is a very good result from self INR monitoring, bleeding events were still lower within the Ross group. While INR management greatly reduces the risk of bleeding events or stroke, it does not reduce it to levels seen in Ross patients.

Additionally, this study (Matchar et. al) shows little difference in events for monthly lab testing vs weekly self testing, although may not be genealizable due to the short follow up time and older patient age. (https://www.nejm.org/doi/full/10.1056/nejmoa1002617)

Finally, I’ve viewed some Q&A sessions on valve replacement. At about the 3:12 mark with this one from Dr. Hanneke Takkenberg, she talks about relative life expectancy being lower in younger patients with mechancial valves. While some research indicates this difference is reduced or goes away with optimal INR management, I think it’s hard to conclude that when some experts in the field continue to state that young people with mechanical valves have lower relative life exppectancies.

bingo ... and we can sure help you with that aspect. Also notice how few studies look past 10 years?

[/QUOTE]
This is definitely frustrating, as well as the lack of matched cohort studies and lack of studies looking at young adults that don’t define young adults as all adults <65 years old.
[/QUOTE]

Now, I'll also suggest you grab a coffee and a notepad and view this presentation (from the Mayo)



[/QUOTE]

Overall, this video had a lot of good information, but had more comparisons between mechanical and tissue in general. I am not considering tissue valves apart from the Ross, so I don’t know how comparable the studies shown are. Also, it seemed to focus more on the 55-70 year old age group as that is where most of the discussion on mechanical vs. tissue is occuring. The information on self monitoring of INR at the end was very helpful.



myself I tend to agree with your view ... consider a second opinion and discuss that exact point (that I underlined)
Should I get surgery soon or wait until the stenosis becomes severe or the aneurysm grows larger?

[/QUOTE]

I will make sure to discuss this with my surgeon.

[/QUOTE]

well anecdotally having it repaired really extends your life compared to not knowing it was there and then suddenly dying. Since you'll now be monitored over time for some time to come (I go for checkups about every 2 years (more or less) and so if anything like that emerges (unlike the general public) we'll get notice.

[/QUOTE]

This is definitely true and a more positive way to look at it. I suppose I’m fairly pessimistic in general (as well as having pretty bad health anxiety). I’m just mostly afraid of dying and the concept of not existing any more, which is why I’m so fixates on long term survival. I’ve seen some information on stoicism that you’ve shared in your prior posts, and I’m trying not to worry about things I can’t control but I find it fairly difficult. I’ve read some Marcus Aurelius in the past but I may have to read Meditations again.

[/QUOTE]

Sounds like you're on the right path to making an informed decision.

[/QUOTE]
Thank you again for your response. It’s clear you spend a lot of time helping people here and it’s a great service to people just discovering they may need valve surgery. I also want to apologize to anyone reading this for the formatting issues. I’m sure I’ll get the hang of it soon.
[/QUOTE]

Best Wishes
[/QUOTE]

Thank you,
Josh
[/QUOTE]
Regarding knowing it was there and you are lucky to have caught it in time. Is the better way of looking at it. I think most of us, including myself, do a bit of the why me. But the reality is I was walking around with an aneurysm that was almost 5 cm doing things like pulling fence posts out of the ground in my yard and mixing up 80 lb bags of concrete etc. A few months after that particular job is when they discovered my aneurysm. They thought it was 4.7 to 4.8 cm but it was actually 4.99 cm. Of course. I wish I was born with a normal aortic valve and never had this issue. But I'm also very thankful that it was caught, that there is modern medicine available to fix it, and even more importantly it turns out that My son has a normal valve and I'm here to watch him grow up. One other thing, the spot you're in now is probably the most difficult because you're trying to process all this information and decide what to do. And afterwards, even if everything turns out great, you might occasionally think "Maybe this would have been a better choice" But it's best not to do too much of that either. The good news is you're getting your feet under you and figuring out what you want to do and it will be taken care of and I would imagine a few years down the road. You'll be amazed how much time you spent thinking about it and how little you probably will then. Best wishes!

 

[Critter]

Welcome to forum Josh although your numbers look to be pretty good you are symptomatic with the valve. I would start thinking about surgery sooner rather than later. The aortic aneurysm will probably not get worse once you throw that valve in the trash and replace with a carbon fiber valve and don’t look back. As long as there is a jet of blood hitting the root of Aorta it will continue to degenerate. Doing it sooner may keep you from having a Dacron graft for your Aorta (complicated surgery implanting coronary arteries. That potentially can be avoided. Once a person is symptomatic generally you have a 50% mortality rate in a year, obviously your mileage may vary.