New member with the usual dilemma

[j42195]

Hi everyone!
Male, late 30s, based in the Netherlands. I've always been quite active and sporty. I've been running regularly for years, have completed a couple of marathons etc. I also enjoy hiking, playing tennis and just being active in general.

A couple of years ago, I started feeling unwell, tired, more anxious, intolerant to heat etc etc (it was really a whole list of symptoms) and I couldn't handle as much exercise as I was used to. Fast forward to this year, I finally managed to get a referral to an excellent cardiologist who has diagnosed me with dysautonomia and wanted do some follow-up tests to rule potential heart issues out. A month ago, while performing an echo of my heart, he noticed that I have a Bicuspid Aortic Valve. He also said that something (maybe the aortic annulus?) is dilated to 42mm, while it should ideally be under 38mm. Furthermore, there's some regurgitation going on, the severity of which he described as being at 2 (on the scale from 1 to 5). He has now referred me to his colleague, who specialises in cardio genetics. Unfortunately, the waiting list is rather long, and therefore I won't be able to see him till the end of August, most likely, which is causing a lot of anxiety, naturally.

1. How likely is it that I will need a surgery within a year or so?
2. I know this topic has been discussed at length already, but which procedure/valve would be recommended for someone of my age, knowing that my priority is to be able to run and play tennis afterwards? I'm quite terrified of the ticking sound when it comes to the mechanical valve, and therefore was hoping that either Ross or Ozaki would be an option, perhaps?
3. I was told that in the meantime, I should not lift weights, but can still do some running at a relaxed pace and play some tennis (but not competitively). Statistically speaking, how high are the risks here?
4. Any tips or tricks in terms of dealing with the waiting and anticipation anxiety?

Thank you!
42195

 

[Motion4663]

Welcome to the Forum! I'm sure others here will be able to answer your first 3 questions. for the 4th:

While waiting for a diagnosis, and waiting for surgery, I took it 1 day at a time. I had to wait for weeks in between appointments as well from a general physician, multiple tests, to a cardiologist, multiple tests, then to a cardiac surgeon, tests and scheduled. The one thing I was told is if it was a life-threatening emergency, I would have been rushed into surgery. A few months wait to ensure everything is done in the correct order before open heart surgery is prudent. I controlled my breathing, didn't rush myself physically, and made it my goal to get to appointments early and non-stressed. I personally waited about 3 months from seeing a doctor to actually getting surgery.

Best of luck!

 

[Protimenow]

I wouldn't be 'terrified' of a clicking valve. I got my St. Jude in 1991 and the 'clicking' quickly became a non-issue. I couldn't play hide and seek with my daughter because, even standing behind a door, she heard me. I annoyed a person with sensitive hearing because he thought I was using a cheap watch. I actually DID have a cheap watch for a while (an old Ingersoll Mickey Mouse watch), and my wife thought I was having a heart attack when she heard it ticking six times a second.

I didn't (and don't) fear warfarin -- it's easy to manage (for me, and many others here), and hasn't really affected my lifestyle.

I was told that I had an aortic murmur when I was about 22 or 23 - and told that I'll need surgery 'in about 20 years.' When my symptoms approached a point where I was feeling the effects of the aortic valve failing, I got my St. Jude mechanical implanted.

I chose not to wait until symptoms were REALLY bad - but my heart had already enlarged. 30 years later, I'm now sorry that I didn't get this done sooner, when my heart was even stronger.

For me, at 41, mechanical was a no brainer.

But this is just MY experience. I won't pretend to suggest what you should do or how long you should wait before making a decision.

Welcome to this forum and good luck.

 

[j42195]

Welcome to the Forum! I'm sure others here will be able to answer your first 3 questions. for the 4th:

While waiting for a diagnosis, and waiting for surgery, I took it 1 day at a time. I had to wait for weeks in between appointments as well from a general physician, multiple tests, to a cardiologist, multiple tests, then to a cardiac surgeon, tests and scheduled. The one thing I was told is if it was a life-threatening emergency, I would have been rushed into surgery. A few months wait to ensure everything is done in the correct order before open heart surgery is prudent. I controlled my breathing, didn't rush myself physically, and made it my goal to get to appointments early and non-stressed. I personally waited about 3 months from seeing a doctor to actually getting surgery.

Best of luck!

Thank you for sharing this. Much appreciated.

I wouldn't be 'terrified' of a clicking valve.

I'm also rather sensitive to ticking clocks and similar sounds, so the prospect of having that sound with me at all times feels, indeed, rather terrifying at the moment.

 

[Protimenow]

I hear those sounds, too, and if I focus on them, I guess it can be somewhat annoying.

After a while, I stopped hearing the click from my heart (although others still might) - if I'm resting in a quiet room, I feel (or, perhaps, hear) the sound (or thump) of my valve, if I focus on it.

Sound emanating from inside your chest may be a lot different from an ongoing ticking clock nearby--especially if, in the back of your mind, you realize that this is what's keeping you alive. And, of course, you can always go with tissue or some other approach - but probably have to get some invasive - or possibly - non-invasive interventions down the road.

 

[Deidra]

How likely is it that I will need a surgery within a year or so?

The AHA guidelines recommend surgery to replace the aortic valve for patients with symptoms and severe aortic regurgitation, and patients with severe regurgitation and an ejection fraction less than 55%. However, they also recommend surgery to replace the valve if a patient has moderate or severe aortic regurgitation and is undergoing cardiac surgery for some other reason. For the aorta, they recommend surgery in bicuspid valve patients in the 5-5.5cm area, but for patients with any additional risk factors like rapid growth, they recommend surgery starting with 4.5cm.

Based on the grading of your regurgitation, it sounds like it's in the mild-moderate range. It sounds like you're not sure what part of the aorta your doctor was referring to so I'm unclear on that detail. Your surgery may end up being driven by problems with the aorta, and they may want to repair or replace the valve at the same time. Either way, it's hard for any of us to say, but given the fact that you have symptoms and are still young, you should do this sooner rather than later. Tearing off the band-aid now will benefit you in the long run. You do not want to wait until you have permanent loss of heart function.

I know this topic has been discussed at length already, but which procedure/valve would be recommended for someone of my age, knowing that my priority is to be able to run and play tennis afterwards? I'm quite terrified of the ticking sound when it comes to the mechanical valve, and therefore was hoping that either Ross or Ozaki would be an option, perhaps?

In my view, a surgical mechanical valve replacement is a no-brainer here. You are young. If you don't want to have heart surgery again (and why would you), a mechanical valve gives you the best chance at never needing another one. Once they have more imaging, talk to your doctor/surgeon about a repair/valve-sparing root replacement, but keep in mind this is not a guaranteed option, and the durability of the repaired valve is hard to predict.

I'm also rather sensitive to ticking clocks and similar sounds, so the prospect of having that sound with me at all times feels, indeed, rather terrifying at the moment.

I just had a mechanical Bentall procedure with an On-X valve a month ago. I have a thin frame so I can hear the ticking very clearly if I'm inside and only wearing a t-shirt or something similar (I can't hear it at all if I have any layers on).

I want to be clear that I am absolutely the kind of person who is sensitive to certain sounds, like ticking clocks in an quiet room, they drive me crazy. I frequently get overstimulated by certain sounds and need to wear noise-cancelling headphones. Since my surgery, I have not once found the ticking of the valve to be a problem. It's completely different from the sensation of 'external' sounds. You don't have any reference frame for what an 'artificial' sound coming from inside your own body sounds like, so people go to the closest thing they can think of: a ticking clock. The sound of the valve is categorically different than a ticking clock, for me.

My biggest piece of advice is don't let this be the deciding factor for you in which valve to choose, and if you do go with mechanical, don't go into surgery with the expectation that the ticking will be a problem for you that you can't adapt to. Mindset is important.

I was told that in the meantime, I should not lift weights, but can still do some running at a relaxed pace and play some tennis (but not competitively). Statistically speaking, how high are the risks here?

Hard to say without knowing more. Probably best to follow the doctor's advice until they have more information/pictures of what is going on. I was told the same when I was first diagnosed with moderate-severe aortic regurgitation and a dilated root.

Any tips or tricks in terms of dealing with the waiting and anticipation anxiety?

Like someone else said, taking it 1 day at a time. Distracting yourself with things you are passionate about/enjoy doing. Spending time with loved ones. Remembering that you are doing everything you can to make sure you are healthy. Being thankful for the fact that the surgery for these problems is very safe and effective, and usually complete fixes the problem; this is not true for many other diseases. If/when you do need surgery, you will recover and be taken care of, and eventually it'll be in the rear view mirror.

I hope this graph gives you some encouragement/peace of mind about the surgery:

Long-Term Outcomes in Patients With Aortic Regurgitation and Preserved Left Ventricular Ejection Fraction​

 

[Protimenow]

I was given 25+ years warning that I will have to get my valve replaced. I probably shouldn't have waited so long.

There was a weekend when I didn't feel good, felt weak, and my doctor at the time mentioned my 'third eye' messing with me - I was focused on my heart and my wife and I felt awful.

When I DID decide to get the surgery, I knew that it was necessary. I knew that I was in good hands. This may be surprising to some people but I was calm going in and had no fear going in - it was out of my hands, anyway.
The night before I went in to the hospital, I took my kids to the drive in theater (a distant memory now - theater has been gone for decades).

I hope that you look at this as a necessary thing to do. I hope that you are comfortable that your surgeon and his/her team (yes, they have highly trained, highly specialized teams for these surgeries and post-op issues), and that you should come out of doing better in a short amount of time.

 

[Deidra]

When I DID decide to get the surgery, I knew that it was necessary. I knew that I was in good hands. This may be surprising to some people but I was calm going in and had no fear going in - it was out of my hands, anyway.

This is absolutely how I felt too. Once the surgery was scheduled a lot of my fear and apprehension just washed away. I was confident in my surgeon and his team and I was right to be. For us its a huge life-changing event, for them its just another day.

I hope that you look at this as a necessary thing to do. I hope that you are comfortable that your surgeon and his/her team (yes, they have highly trained, highly specialized teams for these surgeries and post-op issues), and that you should come out of doing better in a short amount of time.

Absolutely this. There were nine people in the room during my surgery, with three on standby as backups. There will be an entire team of people there whose entire job is to keep you alive and make sure the surgery goes smoothly.

 

[pellicle]

ticking clocks and similar sounds

perhaps what I said in this post gives a better context
https://www.valvereplacement.org/th...on-confused-about-symptoms.889622/post-934055

 

[j42195]

Again, thank you all so much for your replies.

In my view, a surgical mechanical valve replacement is a no-brainer here. You are young. If you don't want to have heart surgery again (and why would you), a mechanical valve gives you the best chance at never needing another one. Once they have more imaging, talk to your doctor/surgeon about a repair/valve-sparing root replacement, but keep in mind this is not a guaranteed option, and the durability of the repaired valve is hard to predict.

I completely understand that the mechanical valve is preferable over the bio-prosthetic one. But what about the Ross or Ozaki procedures? To my understanding, especially with the Ozaki one, you're essentially both the donor and the recipient. Therefore it sounds quite logical to me that the body would react to it very well. Of course, I understand that there will be pros and cons to each one of these options, but just trying to understand why someone in my situation shouldn't consider Ozaki (and possibly Ross) as a strong option?

I just had a mechanical Bentall procedure with an On-X valve a month ago. I have a thin frame so I can hear the ticking very clearly if I'm inside and only wearing a t-shirt or something similar (I can't hear it at all if I have any layers on).

I want to be clear that I am absolutely the kind of person who is sensitive to certain sounds, like ticking clocks in an quiet room, they drive me crazy. I frequently get overstimulated by certain sounds and need to wear noise-cancelling headphones. Since my surgery, I have not once found the ticking of the valve to be a problem. It's completely different from the sensation of 'external' sounds. You don't have any reference frame for what an 'artificial' sound coming from inside your own body sounds like, so people go to the closest thing they can think of: a ticking clock. The sound of the valve is categorically different than a ticking clock, for me.

I have a rather thin frame too. But it's so very reassuring to hear that, even for someone who's sensitive to various sounds, it's not a problem. It's a matter of mindset, indeed.

Distracting yourself with things you are passionate about/enjoy doing.

Absolutely. I've been trying to do that. However, I'm really passionate about running, playing tennis etc. And while these activities help me deal with anxiety, I have to constantly keep an eye on my Garmin watch now in order to keep my HR at a certain level.

I hope that you look at this as a necessary thing to do. I hope that you are comfortable that your surgeon and his/her team (yes, they have highly trained, highly specialized teams for these surgeries and post-op issues), and that you should come out of doing better in a short amount of time.

Yes, I definitely do. In fact, if I could, I would just go for the surgery ASAP. It's the waiting that's making me nervous the most.

 

[Deidra]

I completely understand that the mechanical valve is preferable over the bio-prosthetic one. But what about the Ross or Ozaki procedures? To my understanding, especially with the Ozaki one, you're essentially both the donor and the recipient. Therefore it sounds quite logical to me that the body would react to it very well. Of course, I understand that there will be pros and cons to each one of these options, but just trying to understand why someone in my situation shouldn't consider Ozaki (and possibly Ross) as a strong option?

The following is my views based on my understanding of the options.

You're already familiar with the upsides and downsides of mechanical and bioprosthetic valves.

The benefits of the Ozaki and Ross is that they use your own tissue, and thus don't require lifelong anticoagulation therapy (unless there is a comorbidity like AFib, which is somewhat common after surgery). I would assume they also have lower rates of clots and infection. They are more often used in the pediatric population since the valve can grow with the patient. But they both have downsides as well.

First of all, both are very technically demanding for the surgeon.

The Ross procedure takes what was a 1 valve problem and turns it into a 2 valve problem. Arnold had to have two emergency surgeries in his 70s about 20 years after his Ross to fix/replace both valves. Also worth keeping in mind that most studies on the Ross are done with very careful patient selection and in hospitals with a large volume of these procedures. They may not be representative of the results of the Ross in a wider sample size. My cardiologist helped write a study at the hospital where I got my surgery about their outcomes with the Ross. Within 6 years, 24% of patients needed a re-operation.

I'm not super familiar with Ozaki, but based on some cursory research, I couldn't find any studies that have solid data on the outcomes of the procedure after 10+ years. That alone would make me wary about it. Almost all the articles and studies about it I can find are about its use in the pediatric setting. I struggle to imagine how the pericardial tissue they use to repair the valve has the same durability and effectiveness as the complicated layered elastic fibers in native valve leaflets.

Since they are so technically demanding, I would be very proactive in asking the surgeon how many Ozaki/Ross procedures they do per year and how much experience they have with them, what their outcomes are like, etc.

Purely based on the amount of evidence for long-term durability, I would much rather chose something tried and tested like a bileaflet mechanical valve over something like the Ozaki or Ross. There is a good reason that those 2 make up a tiny minority of valve interventions in adults.

When I was talking over the options with my surgeon, his statement was that "if the young patient is amenable to warfarin, mechanical is the best option." And this is coming from a surgeon who specializes in adult congenital heart disease and does Ozaki and Ross procedures somewhat frequently.

 

[Teapotimus]

But what about the Ross or Ozaki procedures?

The Ozaki doesn't have much for long term data, and from what I've seen the data that is available is in older patients.

The Ross is interesting, Arnold is often used as the measuring stick but it's important to remember he's about as far from the mean of physicality as possible. In addition he also damaged his Ross procedure the day after surgery according to an interview he gave. Hard to say what effect that had on his reoperation, and the longevity of his procedure. Current Ross procedures have strict blood pressure and inflammation control for at least a year, which apparently leads to much better outcomes. I'm not sure that was standard when Arnold had his procedure.

More recent data on the Ross is very promising, but the caveat is you need access to one of the few surgeons who are truly passionate about it. I personally would go for the Ross procedure if I could schedule with Dr. Hamamsy, Dr. Stelzer, Dr. Starnes, or Dr. Skillington. If I couldn't make it to one of those surgeons I wouldn't go for a Ross. There may be more those are just the surgeons I'm aware of that have done a high volume of Ross procedures and have published impressive results.

There are a couple of recently published long term follow ups on the Ross procedure that show a very favorable reoperation rate into the third decade. Dr. Skillington in particular has a series that has a sub 1% annual reoperation rate.

As for benefits the main one is no long term medication, barring complications. A lot of the Ross literature focuses on life expectancy, not sure how valid that really is. What I personally find intriguing about the Ross is the preservation of the entire aortic structure. There are some interesting papers about the Autograft being able to communicate and function with the heart as a native valve does, as opposed to a valve made of foreign material.

 

[Deidra]

More recent data on the Ross is very promising, but the caveat is you need access to one of the few surgeons who are truly passionate about it. I personally would go for the Ross procedure if I could schedule with Dr. Hamamsy, Dr. Stelzer, Dr. Starnes, or Dr. Skillington. If I couldn't make it to one of those surgeons I wouldn't go for a Ross. There may be more those are just the surgeons I'm aware of that have done a high volume of Ross procedures and have published impressive results.

There are a couple of recently published long term follow ups on the Ross procedure that show a very favorable reoperation rate into the third decade. Dr. Skillington in particular has a series that has a sub 1% annual reoperation rate.

I think it's important to tease out what patient qualities these surgeons are selecting for, not just who the best surgeons are. That is very relevant to us. As someone who did have pure aortic insufficiency and a dilated root, I was 100% confident that the Ross wasn't a good idea for me. My surgeon seemed to agree.

https://www.ahajournals.org/doi/10.1161/circulationaha.109.897538

It is clear that it is in the pediatric population, particularly young children, that the Ross procedure has its greatest role. Reoperation is inevitable in the majority of these children, regardless of prosthesis type, because of somatic growth or prosthetic valve dysfunction. The specter of early bioprosthetic valve deterioration and the challenges of warfarin anticoagulation make the Ross procedure an appealing choice when AVR is necessary. In our pediatric practice, the Ross operation is our procedure of choice when AVR is required; among adults, however, we are highly selective. Compared with a mechanical prosthesis, the Ross is likely significantly less durable. Although Yacoub et alreported an overall freedom from pulmonary homograft reoperation of 94.9% and freedom from autograft reoperation of 92.9% at 10 years, certain populations have been shown to fare significantly worse than this. This includes patients with rheumatic heart disease, preoperative aneurysm, and predominant preoperative aortic regurgitation. A recent report from David et al demonstrated that the Ross procedure provided suboptimal results in male patients with aortic regurgitation. The best outcomes were achieved in female patients, those with aortic stenosis, and those with an aortic annulus <27 mm. The technique of implantation did not affect late outcome. Importantly, those with a dilated aortic annulus did not fare well, despite annular reduction procedures being applied at the time of the Ross procedure. Although there is an abundance of literature reporting reoperation rates after the Ross procedure, these reoperation rates alone do not reflect the valve disease that patients may be harboring who have not yet come to reoperation.​

​

Emphasis mine. Here is a newer study with n=2,444 that shows very similar data: https://pubmed.ncbi.nlm.nih.gov/33736823/

Larger aortic annulus diameter (hazard ratio: 1.12/mm; 95% confidence interval [CI]: 1.05 to 1.19/mm; p < 0.001) and pre-operative presence of pure aortic insufficiency (HR: 1.74; 95% CI: 1.13 to 2.68; p = 0.01) were independent predictors for autograft reintervention.​

​

This is how you end up with a particular surgeon reporting "a sub 1% annual reoperation rate" while others like the hospital I had surgery at end up with "within 6 years, 24% of patients needed a re-operation."

 

[pellicle]

But what about the Ross or Ozaki procedures

Many good detailed answers above. However, here's the razor I'd pair that back with: why do they remain so fringe if they were as good?

If something sounds "too good to be true" maybe there is a problem. Or every cardiac surgeon is a dummy.

¯\_(ツ)_/¯

 

[j42195]

Fair points, everyone! There's a lot to be taken into account, for sure.

Many good detailed answers above. However, here's the razor I'd pair that back with: why do they remain so fringe if they were as good?

To my rather limited understanding, they remain fringe for the following reasons:

• There are strict requirements, which means fewer people actually qualify for Ross or Ozaki.
• Both of these procedures are significantly more complex than the usual replacement with a mechanical valve, as some have already called out above. Therefore, there are fewer specialists who are skilled/experienced enough to perform these procedures.
• They simply have not been around as long as the other procedures that are performed more frequently. Or at least that's the case with Ozaki, for sure. I do not have the data to support this, but I wouldn't be surprised if both, Ross and Ozaki, have been gradually gaining traction over the last 10 years or so.

To me personally, it does not sound too good to be true. All of these procedures come with their pros and cons. So, I see Ross and Ozaki as just two more options that should be considered. Just hoping that I will have the chance to properly discuss it, instead of being pushed into an option that's more convenient/popular in the local hospitals (I would be willing to go abroad for it if needed, though!).

A small-ish study on the patients aged 51 +-14, which shows that "using a well-prepared standardized approach, the Ozaki procedure is reproducible with a short learning curve, excellent hemodynamic performance, and good quality of life.": https://www.sciencedirect.com/science/article/pii/S2474870623001033

 

[Teapotimus]

I think it's important to tease out what patient qualities these surgeons are selecting for, not just who the best surgeons are.

Generally yes, but the surgeons I listed have series with "all comer" patients, meaning pure AR and mixed AS/AR. The surgeons experience, capability, and technique with the Ross is of the utmost importance. It's inherently a more complex technique and that's why I think someone considering the Ross really needs to research the surgeon. There's a massive difference between a surgeon who has done 50 - 100 Ross procedures and Dr. Stelzer/Dr. Hamamsy who have done over 1500 combined.

Newer techniques are showing quite a lot of promise in expanding the Ross to AR which historically has been a predictor of poor Ross outcomes. Again though, it's very surgeon specific, Dr. Skillington's technique for example appears to be unique and appears to be producing fantastic outcomes for both AS and AR (I believe there's a rather dense paper by Dr. Hamamsy speaking about a similar technique and he has also reported excellent outcomes for AR patients).

https://www.jtcvs.org/article/S0022-5223(14)01264-1/fulltext

• To summarize, the mean age of patients was 39.5 years (limits, 15-63 years), 224 patients (69.6%) were male, and presentation was with aortic stenosis (AS) in 149 patients (46%), AS/AR in 70 patients (22%), and AR in 103 patients (32%).
• Freedom from aortic valve reoperation is 96% (95% confidence interval, 92-98) at 18 years.

There was another series with a follow up over 20+ years that had an excellent reoperation rate as well and the patients included a large burden of AR.

https://jamanetwork.com/journals/jamacardiology/article-abstract/2811496

• This study included 108 adults (92 [85%] male) with a median age of 38 years (range, 19-66 years). Median duration of clinical follow-up was 24.1 years (IQR, 22.6-26.1 years; 2488 patient-years), with 98% follow-up completeness.
• Of these patients, 9 (8%) had active endocarditis and 45 (42%) underwent reoperations. The main hemodynamic lesion was stenosis in 30 (28%) and regurgitation in 49 (45%).
• At 25 years, freedom from any reintervention was 71.1% (95% CI, 61.6%-82.0%); from autograft reintervention, 80.3% (95% CI, 71.9%-89.6%); and from homograft reintervention, 86.3% (95% CI, 79.0%-94.3%).

This is how you end up with a particular surgeon reporting "a sub 1% annual reoperation rate" while others like the hospital I had surgery at end up with "within 6 years, 24% of patients needed a re-operation."

I did some research on OHSU's outcomes of the Ross procedure as well and read that same study with Dr. McGrath when I was a patient there last year, and I agree that a Ross procedure from OHSU is not a good choice. This is also evidenced in the STS database results for congenital surgeries at OHSU in the pediatric population. Category 2 includes the Ross procedure, though this doesn't stratify by operation type and this is for mortality. It seems outcomes overall at OHSU weren't ideal and I wonder how that contributes to patent Ross procedures at the institution, I'm not surprised by that large failure percentage from them.

Overall I believe the Ross is an interesting option, and it seems to moving slowly towards being a good choice for a larger group of patients, which it should move slowly. This is all predicated on the surgeon and the technique they use however. Progress in the Ross procedure is exciting, to me at least.

https://www.jtcvs.org/article/S0022-5223(21)00200-2/abstract

• Survival at 1, 5, and 10 years, respectively, was 97.2%, 97.2%, and 95.6% in the unwrapped cohort and 100%, 100%, and 100% in the wrapped cohort (P = .15). Autograft valve failure occurred in 25 (35.2%) of the unwrapped and 3 (5.2%) of the wrapped patients.
• The cumulative incidence of autograft reintervention (death as a competing outcome) at 1, 5, and 10 years, respectively, was 10.2%, 14.9%, and 26.8% in the unwrapped cohort and 4.0%, 4.0%, and 4.0% in the wrapped cohort.

 

[j42195]

Generally yes, but the surgeons I listed have series with "all comer" patients, meaning pure AR and mixed AS/AR. The surgeons experience, capability, and technique with the Ross is of the utmost importance. It's inherently a more complex technique and that's why I think someone considering the Ross really needs to research the surgeon. There's a massive difference between a surgeon who has done 50 - 100 Ross procedures and Dr. Stelzer/Dr. Hamamsy who have done over 1500 combined.

I totally understand the need to research the surgeon. I'm based in the Netherlands, though, so the surgeons you've listed might not be accessible to me. I would be willing to travel to Germany or other EU countries for the operation if needed, though.

Any recommendations in NL (or EU)?

 

[Teapotimus]

I totally understand the need to research the surgeon. I'm based in the Netherlands, though, so the surgeons you've listed might not be accessible to me. I would be willing to travel to Germany or other EU countries for the operation if needed, though.

Any recommendations in NL (or EU)?

Unfortunately I'm not familiar with anyone in the EU. A quick search brought up Maximiliaan L. Notenboom, BSc (Erasmus University Medical Center, Rotterdam, the Netherlands), however. I don't think he is currently a surgeon but his name is listed on one of these long term Ross outcome studies, he may be able to point you in the right direction if it's something you wish to pursue.

https://esc365.escardio.org/person/1166520

 

[Deidra]

It's inherently a more complex technique and that's why I think someone considering the Ross really needs to research the surgeon. There's a massive difference between a surgeon who has done 50 - 100 Ross procedures and Dr. Stelzer/Dr. Hamamsy who have done over 1500 combined.

Agreed.

Overall I believe the Ross is an interesting option, and it seems to moving slowly towards being a good choice for a larger group of patients, which it should move slowly. This is all predicated on the surgeon and the technique they use however. Progress in the Ross procedure is exciting, to me at least.

Also agreed in that progress is exciting.

To clarify, the point of my post was "if you match this clinical description (young, male, pure AR, dilated annulus), be wary of the Ross procedure (unless you have access to these three or four guys who do it very well.)"

 

[j42195]

Unfortunately I'm not familiar with anyone in the EU. A quick search brought up Maximiliaan L. Notenboom, BSc (Erasmus University Medical Center, Rotterdam, the Netherlands), however. I don't think he is currently a surgeon but his name is listed on one of these long term Ross outcome studies, he may be able to point you in the right direction if it's something you wish to pursue.

https://esc365.escardio.org/person/1166520

Thank you, I'll look him up.

I've also just stumbled upon Dr Jaroslav Benedik, who's based in Germany. He's (co-)published quite a few research papers: https://www.researchgate.net/profile/Jaroslav-Benedik. He has sort of adopted and improved the Ozaki method, which he's been teaching about in EU. If anyone has any experience with Dr Benedik or the Helios Clinics (where he currently works, I believe), please let me know.