Aortic Valve Surgery on the Road Ahead

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carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,315
Location
kansas city, mo
Hello everyone, I found this forum a few months ago and it has been extremely helpful in being able to read all the stories of people here who have gone through similar valve related issues. I'm currently in my mid 20s and was diagnosed over a decade ago with aortic valve regurgitation that was moderate after contracted rheumatic fever. I was recommended for AVR but up till now have not undergone it. The last couple years my LVEDD has been pushing the high 6s and LVEF dipping into the lower 50s and although I have no symptoms unless I exert myself (get SOB after a while and obv cannot meet my age standards on a stress test) so I think it's just about time to do something this year. I'm encouraged to see the advances being made in field of aortic valve repair and after all this time I have severe AR because of a RCC prolapse, no calcification or stenosis, no enlarged root issues so it is an isolated aortic insufficiency problem. I would prefer to be able have this repaired rather than having to deal with the prospect of a mechanical valve and warfarin or multiple ops with tissue valves failing quickly in younger people.

If anyone has any experience with undergoing repair for isolated aortic valve insufficiency or any stories that would be helpful. I'm hopeful that the introduction of the HAART annuloplasty geometric ring and more experience overall in aortic valve cusp pathology will help repairs be more durable, obviously given the size of my ventricle I would only want to have a repair attempted if a good and durable repair with little to no AR is possible
Welcome to a great home of people who can try to ease your mind. I had aortic valve repair back in 1973 as an 8 year old, called a double bypass. It s more commonly done on children and adults. Only that repair can only do so much, then over time, the aortic valve does have to be replaced. I had a 15 year guarantee on the repair, so I went past the 15 year guarantee and had the replacement done in 2001, St. Jude's leaflet valve. So I hope that it helps that some of us are lifelong heart people. Not all have man made valves, or tissue, or bovine valves, some even have the more modern valves. Mine is 20 years old. Good luck in feeling welcome here and keep asking questions. Welcome to a great place for information and experience.
 

Flymark

VR.org Supporter
Supporting Member
Joined
Jun 29, 2020
Messages
12
Welcome VP69. As you already know you landed at the right place. Use this forum as the great source for topical issues and experiences that it is.
 

vp69

Member
Joined
Mar 4, 2021
Messages
13
just wanted to let you guys know everything went smooth with the surgery.. valve was too damaged to be repaired so I had the ROSS procedure. I'm already off pain meds and basically doing most everything I was before the operation, just with a bit more fatigue. At 25 it's a lot to hope for but I am hopeful that this (with the better techniques) can last me out without another open heart, and just do a TPVR if the homograft on the pulmonary side needs to be addressed in the later decades, with hopefully more durable valves in that position. extremely hopeful, and happy. Hoping for a full remodeling of my LV in the months to come. Thank you all for your input during my journey
 

Croooser

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Supporting Member
Joined
Apr 21, 2021
Messages
89
Glad to hear that your surgery was successful. Your diligence in understanding your condition and the various options is commendable. It will serve you well in your recovery and ongoing monitoring. Best wishes for a long, long term life of the Ross.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,793
just wanted to let you guys know everything went smooth with the surgery.. valve was too damaged to be repaired so I had the ROSS procedure. I'm already off pain meds and basically doing most everything I was before the operation, just with a bit more fatigue. At 25 it's a lot to hope for but I am hopeful that this (with the better techniques) can last me out without another open heart, and just do a TPVR if the homograft on the pulmonary side needs to be addressed in the later decades, with hopefully more durable valves in that position. extremely hopeful, and happy. Hoping for a full remodeling of my LV in the months to come. Thank you all for your input during my journey

Welcome to the other side vp69! Hoping that your LV remodels completely. Please keep us posted regarding how your recovery comes along.
 

vp69

Member
Joined
Mar 4, 2021
Messages
13
just wanted to update everyone.. recovery has been so much smoother after my Ross procedure than expected. a couple skipped beats here and there occasionally but they've become fewer in frequency over time. I was able to stop all pain meds (oxy & tylenol) just 2 days after coming home (Day 7 on), and I am now almost 2 months out from the date of the operation and feel great, no pain, I am able to lift things that weight 30-40 pounds without feeling anything weird. Incision healed up and blood pressure still under control, on a beta blocker and ACE inhibitor still and probably will be for a year. Going to have a follow up echo soon. I've been back to work for 4 weeks now and have been driving like normal again. Thank you all for the support.

Any idea when you all think it would be safe to head back to the gym and playing tennis again?
 

sarashreen

Member
Joined
May 28, 2015
Messages
11
Location
LEVITTOWN,PA
Hello Everyone. I am 36 years old female. I had open heart surgery at the age of 5 for VSD closure and AV repair. I was told that I would need AV replacement at the age of 20. But still able to continue life without AV replacement. Currently having severe aortic regurgitation with minimal symptoms. Taking echo every six months/1 year for last 30 years. Now my Cardilogist asked me to consult with surgeon. He wanted to get surgeon’s opinion as he noticed my LVEF was reduced to 45% in last echo. I had appointment with heart Surgeon Dr Desai(Dr Bavaria’s team) at Penn Medicine. He scheduled me the tests for MR heart velocity, MR heart W and WO IV contrast, CT chest Angio W and WO IV contrast next week. Dr.Desai recommending ROSS procedure for AV replacement. He will decide If I am eligible for ROSS after seeing the results from these tests. He told ROSS replaces a nonfunctioning aortic valve with the pulmonary valve. A healthy donor valve replaces the original pulmonary valve. I am worried about this ROSS procedure since everyone is saying its complex procedure. Also I am worried I may have increased risk as I am going to have 2nd open heart surgery. Please guide me with your suggestions.

1. Its not something to take risk with two valves in ROSS?
2. Not sure about durability of pulmonary replaced as aortic valve?
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,793
Hello Everyone. I am 36 years old female. I had open heart surgery at the age of 5 for VSD closure and AV repair. I was told that I would need AV replacement at the age of 20. But still able to continue life without AV replacement. Currently having severe aortic regurgitation with minimal symptoms. Taking echo every six months/1 year for last 30 years. Now my Cardilogist asked me to consult with surgeon. He wanted to get surgeon’s opinion as he noticed my LVEF was reduced to 45% in last echo. I had appointment with heart Surgeon Dr Desai(Dr Bavaria’s team) at Penn Medicine. He scheduled me the tests for MR heart velocity, MR heart W and WO IV contrast, CT chest Angio W and WO IV contrast next week. Dr.Desai recommending ROSS procedure for AV replacement. He will decide If I am eligible for ROSS after seeing the results from these tests. He told ROSS replaces a nonfunctioning aortic valve with the pulmonary valve. A healthy donor valve replaces the original pulmonary valve. I am worried about this ROSS procedure since everyone is saying its complex procedure. Also I am worried I may have increased risk as I am going to have 2nd open heart surgery. Please guide me with your suggestions.

1. Its not something to take risk with two valves in ROSS?
2. Not sure about durability of pulmonary replaced as aortic valve?

Hi Sarashreen.

I'd recommend getting a second opinion.

If you take a look at Dr. Desai's profile, the very first thing it says is that she specializes in the Ross Procedure. It should not be surprising that she recommends the Ross for you:

Dr. Desai profile: Dr. Nalini Desai, MD - Anesthesiology Specialist in Ross, CA | Healthgrades

To be clear, if someone is set on getting a Ross Procedure, you should get it done by a surgeon who specializes in the Ross. But, if you get an opinion from a surgeon who really likes the Ross Procedure, there is a very good chance that this is what they are going to recommend.

Here are some things to consider:

At your age, the guidelines recommend a mechanical valve, unless you are contraindicated to warfarin. This is the valve which will give you best chance at this being your last open heart surgery.

If you go with the Ross, you are almost certain to have at least two more valve surgeries. The pulmonary valve was not designed for the aortic position, and while it will do some adaption, it will not last forever in that position. About 20 years is typical. Also, you are receiving a donor pulmonary, and this will not last forever. If you get very lucky, both of these valves will fail at the same time, and then you can take care of them both with one procedure. But, this is not typical. Arnold Schwarzenegger had the Ross, and like most Ross recipients, he had to get two more procedures about 18-22 years later.

You will no longer have a one valve problem, but will have a two valve problem.

You have already had one valve surgery at age 5. If you go Ross it will be #2 for you. Then, likely sometime in the 18-22 year range, if you are lucky and they last that long, you will get surgery #3 and #4. You will be about 56 at that time. Unless they replace both with mechanical at that point, you will be facing at least one more procedure for each valve, so now that’s surgery #5 and #6. If those valves last 10-20 years and you live to your life expectancy, that would bring it to #7 and #8 on the next round. The idea of getting that many procedures is mind blowing to me, even if you went mechanical to replace the failing Ross valves, that would likely mean having 5 OHS total by the time you are in your 50s.

Don’t be misled by the study which found that the Ross was superior to either a mechanical valve or a tissue valve. That was called a long-term study. I’ve linked the study below. You will note that the average follow up time was 14.2 years. In that the additional surgeries from the Ross are going to start really being a factor after 18-24 years of follow up, after aortic and pulmonary valves have needed replacement, I would not expect that a study with an average follow up of 14.2 to accurately capture the long term risk of the Ross for young patients. In that you are only 36, I would encourage you to look at the 25+ year outlook, not just the 10–20-year outlook. The Ross will likely give you many more surgeries in your future, even though they won’t occurring for 18+ years, and that is if things go well.

Cryolife provides the pulmonary donor valves for the Ross Procedure, and they have been heavily promoting it. I would rate their marketing a success, as some clinics have started doing more Ross Procedures.

I would consider a second opinion from a top surgeon, and I would ask a lot of questions of Dr. Desai as to why she would recommend Ross over mechanical. Ask her about patients who received a Ross in their 30s who are now in their 60s or 70s

Here is the CryoLife website, with their promotion of the Ross Procedure:

The Ross Procedure - CryoLife, Inc.

But take a close look at the study, which they claim as the supporting evidence that the Ross is superior to a mechanical valve or tissue valve. You will note that the average follow up time was only 14.2 years. My concern for young patients with the Ross is when things get 20-50 years out.

 

sarashreen

Member
Joined
May 28, 2015
Messages
11
Location
LEVITTOWN,PA
Hi Sarashreen.

I'd recommend getting a second opinion.

If you take a look at Dr. Desai's profile, the very first thing it says is that she specializes in the Ross Procedure. It should not be surprising that she recommends the Ross for you:

Dr. Desai profile: Dr. Nalini Desai, MD - Anesthesiology Specialist in Ross, CA | Healthgrades

To be clear, if someone is set on getting a Ross Procedure, you should get it done by a surgeon who specializes in the Ross. But, if you get an opinion from a surgeon who really likes the Ross Procedure, there is a very good chance that this is what they are going to recommend.

Here are some things to consider:

At your age, the guidelines recommend a mechanical valve, unless you are contraindicated to warfarin. This is the valve which will give you best chance at this being your last open heart surgery.

If you go with the Ross, you are almost certain to have at least two more valve surgeries. The pulmonary valve was not designed for the aortic position, and while it will do some adaption, it will not last forever in that position. About 20 years is typical. Also, you are receiving a donor pulmonary, and this will not last forever. If you get very lucky, both of these valves will fail at the same time, and then you can take care of them both with one procedure. But, this is not typical. Arnold Schwarzenegger had the Ross, and like most Ross recipients, he had to get two more procedures about 18-22 years later.

You will no longer have a one valve problem, but will have a two valve problem.

You have already had one valve surgery at age 5. If you go Ross it will be #2 for you. Then, likely sometime in the 18-22 year range, if you are lucky and they last that long, you will get surgery #3 and #4. You will be about 56 at that time. Unless they replace both with mechanical at that point, you will be facing at least one more procedure for each valve, so now that’s surgery #5 and #6. If those valves last 10-20 years and you live to your life expectancy, that would bring it to #7 and #8 on the next round. The idea of getting that many procedures is mind blowing to me, even if you went mechanical to replace the failing Ross valves, that would likely mean having 5 OHS total by the time you are in your 50s.

Don’t be misled by the study which found that the Ross was superior to either a mechanical valve or a tissue valve. That was called a long-term study. I’ve linked the study below. You will note that the average follow up time was 14.2 years. In that the additional surgeries from the Ross are going to start really being a factor after 18-24 years of follow up, after aortic and pulmonary valves have needed replacement, I would not expect that a study with an average follow up of 14.2 to accurately capture the long term risk of the Ross for young patients. In that you are only 36, I would encourage you to look at the 25+ year outlook, not just the 10–20-year outlook. The Ross will likely give you many more surgeries in your future, even though they won’t occurring for 18+ years, and that is if things go well.

Cryolife provides the pulmonary donor valves for the Ross Procedure, and they have been heavily promoting it. I would rate their marketing a success, as some clinics have started doing more Ross Procedures.

I would consider a second opinion from a top surgeon, and I would ask a lot of questions of Dr. Desai as to why she would recommend Ross over mechanical. Ask her about patients who received a Ross in their 30s who are now in their 60s or 70s

Here is the CryoLife website, with their promotion of the Ross Procedure:

The Ross Procedure - CryoLife, Inc.

But take a close look at the study, which they claim as the supporting evidence that the Ross is superior to a mechanical valve or tissue valve. You will note that the average follow up time was only 14.2 years. My concern for young patients with the Ross is when things get 20-50 years out.

Thanks for your valuable suggestions. I will get second opinion definitely. Surgeon is Nimesh Desai not Nalini desai. Here is his profile


I have scheduled for MRI and CT CHEST ANGIO tests for ROSS on Monday. Should I go-ahead with these tests or Should I go for second opinion before taking these tests
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,793
I have scheduled for MRI and CT CHEST ANGIO tests for ROSS on Monday. Should I go-ahead with these tests or Should I go for second opinion before taking these tests

I would go ahead and get the tests done. Even if you don't end up getting the Ross they will provide good data. You will need an angiogram anyway if you are going to get valve surgery. This can be the more invasive angiogram, which was the one I had, but for low risk patients they often will use a CT angiogram. So, hopefully, if you get it done, you won't have to get another angiogram regardless of which procedure you choose.
 

sarashreen

Member
Joined
May 28, 2015
Messages
11
Location
LEVITTOWN,PA
I would go ahead and get the tests done. Even if you don't end up getting the Ross they will provide good data. You will need an angiogram anyway if you are going to get valve surgery. This can be the more invasive angiogram, which was the one I had, but for low risk patients they often will use a CT angiogram. So, hopefully, if you get it done, you won't have to get another angiogram regardless of which procedure you choose.
Thank you Chuck. He scheduled me the tests for MR heart velocity, MR heart W and WO IV contrast, CT chest Angio W and WO IV contrast on 10/3.
 

Deepak khanka

Well-known member
Joined
Jun 24, 2021
Messages
70
Hi Sarashreen.

I'd recommend getting a second opinion.

If you take a look at Dr. Desai's profile, the very first thing it says is that she specializes in the Ross Procedure. It should not be surprising that she recommends the Ross for you:

Dr. Desai profile: Dr. Nalini Desai, MD - Anesthesiology Specialist in Ross, CA | Healthgrades

To be clear, if someone is set on getting a Ross Procedure, you should get it done by a surgeon who specializes in the Ross. But, if you get an opinion from a surgeon who really likes the Ross Procedure, there is a very good chance that this is what they are going to recommend.

Here are some things to consider:

At your age, the guidelines recommend a mechanical valve, unless you are contraindicated to warfarin. This is the valve which will give you best chance at this being your last open heart surgery.

If you go with the Ross, you are almost certain to have at least two more valve surgeries. The pulmonary valve was not designed for the aortic position, and while it will do some adaption, it will not last forever in that position. About 20 years is typical. Also, you are receiving a donor pulmonary, and this will not last forever. If you get very lucky, both of these valves will fail at the same time, and then you can take care of them both with one procedure. But, this is not typical. Arnold Schwarzenegger had the Ross, and like most Ross recipients, he had to get two more procedures about 18-22 years later.

You will no longer have a one valve problem, but will have a two valve problem.

You have already had one valve surgery at age 5. If you go Ross it will be #2 for you. Then, likely sometime in the 18-22 year range, if you are lucky and they last that long, you will get surgery #3 and #4. You will be about 56 at that time. Unless they replace both with mechanical at that point, you will be facing at least one more procedure for each valve, so now that’s surgery #5 and #6. If those valves last 10-20 years and you live to your life expectancy, that would bring it to #7 and #8 on the next round. The idea of getting that many procedures is mind blowing to me, even if you went mechanical to replace the failing Ross valves, that would likely mean having 5 OHS total by the time you are in your 50s.

Don’t be misled by the study which found that the Ross was superior to either a mechanical valve or a tissue valve. That was called a long-term study. I’ve linked the study below. You will note that the average follow up time was 14.2 years. In that the additional surgeries from the Ross are going to start really being a factor after 18-24 years of follow up, after aortic and pulmonary valves have needed replacement, I would not expect that a study with an average follow up of 14.2 to accurately capture the long term risk of the Ross for young patients. In that you are only 36, I would encourage you to look at the 25+ year outlook, not just the 10–20-year outlook. The Ross will likely give you many more surgeries in your future, even though they won’t occurring for 18+ years, and that is if things go well.

Cryolife provides the pulmonary donor valves for the Ross Procedure, and they have been heavily promoting it. I would rate their marketing a success, as some clinics have started doing more Ross Procedures.

I would consider a second opinion from a top surgeon, and I would ask a lot of questions of Dr. Desai as to why she would recommend Ross over mechanical. Ask her about patients who received a Ross in their 30s who are now in their 60s or 70s

Here is the CryoLife website, with their promotion of the Ross Procedure:

The Ross Procedure - CryoLife, Inc.

But take a close look at the study, which they claim as the supporting evidence that the Ross is superior to a mechanical valve or tissue valve. You will note that the average follow up time was only 14.2 years. My concern for young patients with the Ross is when things get 20-50 years out.

Fully agree
 

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