2nd Ross to Rectify initial bad Ross procedure - any facts?

[chrkol]

Hi,

My brother had the Ross procedure 4 years ago when he was 20. We have now discovered that things are pretty bad and the first one was not done properly as a result he needs valve operation again. We have been getting conflicting views from "the best thing is to keep his own valve so go ahead with a corrective Ross" to "if he has a second Ross he is bound to die"!! I have a feeling things are not as bad but there is a lack of information regarding this issue, which I can appreciate is a bit specialised, but we would really like to find out some hard facts: is a second operation, provided it is done properly, durable or will he need to have another one after 5 years, what is the success rate etc.

He is not keen in getting an artificial valve as it will affect his lifestyle but if the 2nd Ross is going to be that bad then he will have to rethink.

Any suggestions are welcome.

Thank you.

 

[Wise]

Hi,

My brother had the Ross procedure 4 years ago when he was 20. We have now discovered that things are pretty bad and the first one was not done properly as a result he needs valve operation again. We have been getting conflicting views from "the best thing is to keep his own valve so go ahead with a corrective Ross" to "if he has a second Ross he is bound to die"!! I have a feeling things are not as bad but there is a lack of information regarding this issue, which I can appreciate is a bit specialised, but we would really like to find out some hard facts: is a second operation, provided it is done properly, durable or will he need to have another one after 5 years, what is the success rate etc.

He is not keen in getting an artificial valve as it will affect his lifestyle but if the 2nd Ross is going to be that bad then he will have to rethink.

Any suggestions are welcome.

Thank you.

I can't help much, but I can tell you that you can only have one Ross Procedure. Maybe they are going to do a valve repair? I'm not sure about that though. I sounds like to me he'll need a replacement. There are others here with much more knowledge than me. They'll be around to help you out, I'm sure. Best wishes to your brother.

Wise

 

[Granbonny]

I gather that your brother is now age 24?..He could go with one of the tissue valves...but, at his age..looking at another OHS in 10-15 years?..That would be his 3rd OHS....in his middle age....I'm sure that other members will chime in..Just want to welcome you..Hope it goes well for your brother..whatever choice he makes. Bonnie

 

[Karlynn]

My personal opinion, is that with one Ross under his belt that is having problems, he should go with the valve type and procedure that will keep him out of the operating room for as long as possible. For him this may mean mechanical (artificial). If you, and he, spend some time searching and reading here, you will find lots of info, and lots of people who live very active lives on Coumadin. Coumadin is the drug that keeps mechanical valves from forming clots and it is a life-long medication for those those with mechanical valves and the reason some people choose to stay away from mechanical.

He should probably have plan A and plan B for valve choice. They won't really know until they open him up again just what they will be dealing with.

Welcome to our site. Encourage your brother to join us too. There's lots of support to be found here.

 

[ALCapshaw2]

A second surgery, YES.

A second Ross Procedure? NO WAY.... where would they get the donor valve? They already took his pulmonary valve to be the aortic (or mitral) valve replacement which apparently is now in failure.

Even an artificial tissue valve is risky. The BEST he could hope for would be 20 years from a Bovine Pericardial Valve, and that is usually only realized in older patients. At his age, artificial tissue valves do well to make over 10 years, thus guaranteeing a third, fourth, and maybe even fifth replacement if he continues to use tissue valves.

I expect his surgeon will strongly recommend a mechanical valve this time around.

'AL Capshaw'

 

[chrkol]

Clarification

Clarification

Hi again,

Thanks for all the messages. It is pretty hard for me to establish the facts. I stay in Britain and my brother is in Greece and to add to the confusion my mother is more or less doing all the talking to the doctors. I am fairly certain now that this is not a 2nd Ross as some of you pointed out correctly but a correction. From what I understand from what I am told there will put some sort of tube (not sure of the material it sounds as it might be a mess) to stop the blood from escaping by more or less pulling the two "bits" together. There is a specialist clinic in Toronto that is supposed to be top for fixing bad Ross operations.

Basically whoever did the first operation wasn' t competent: he never measured to see if the two valves had the same diameter and just collated them as they were. As a result my brother went in for an operation to correct his leak and he came out still with a leak just a slighter leak. Basically the first surgeon knew he had messed up straight after the operation and that the valve wouldn't last more than a few years but he never said anything at the time. Anyway this is the past and we can only move forward.

I have been searching the internet for some time now but there just doesn't seem to be any information regarding corrections on Ross. I can appreciate people's personal experience but this is exactly what it is (some people will be happy with what they did and some wont' depending on how it worked out). Personal experiences are extremely useful for the aftermath and provide a good support group, I believe, but at this stage, what we are looking for is some good hard facts preferably from an independent body and not a hospital so we can make an informed decision. I know that people are managing with the artificial valves and the option hasn't been discounted at all, but it is not the prefered option. The key is to establish how long this can last. Even an artificial one will need to be changed after 15 to 20 years but we ve been told that if a Ross is done properly it can last for ever (this I have managed to cross check with results from research). What I cannot find is information regarding the duration of the valve after a correction on Ross.

Have a good day guys and I ll keep you posted as things progress.

 

[Karlynn]

Even an artificial one will need to be changed after 15 to 20 years.

This is not correct information. Artificial mechanical valves (if that is what you are refering to and not tissue valves) are put in in the hope that they will last the person's lifetime. There are reasons sometime that these valves need to be replaced, but the idea is that they would last a lifetime. I have over 14 years on my St. Jude mechanical w/ it doing well. We have members here with 25 years + on their mechanical valves. The mechanicals made today are even better than the ones we have.

 

[Ross]

If it can be done, as it sounds like they're talking about dacron grafts, then if the valve itself is ok, it should last forever. I would say the chances of that are very slim to none, but I just don't know.

 

[PapaHappyStar]

Hi again,

From what I understand from what I am told there will put some sort of tube (not sure of the material it sounds as it might be a mess) to stop the blood from escaping by more or less pulling the two "bits" together. There is a specialist clinic in Toronto that is supposed to be top for fixing bad Ross operations.

Basically whoever did the first operation wasn' t competent: he never measured to see if the two valves had the same diameter and just collated them as they were. As a result my brother went in for an operation to correct his leak and he came out still with a leak just a slighter leak. Basically the first surgeon knew he had messed up straight after the operation and that the valve wouldn't last more than a few years but he never said anything at the time. Anyway this is the past and we can only move forward.

I have been searching the internet for some time now but there just doesn't seem to be any information regarding corrections on Ross. I can appreciate people's personal experience but this is exactly what it is (some people will be happy with what they did and some wont' depending on how it worked out). Personal experiences are extremely useful for the aftermath and provide a good support group, I believe, but at this stage, what we are looking for is some good hard facts preferably from an independent body and not a hospital so we can make an informed decision. I know that people are managing with the artificial valves and the option hasn't been discounted at all, but it is not the prefered option. The key is to establish how long this can last. Even an artificial one will need to be changed after 15 to 20 years but we ve been told that if a Ross is done properly it can last for ever (this I have managed to cross check with results from research). What I cannot find is information regarding the duration of the valve after a correction on Ross.

Have a good day guys and I ll keep you posted as things progress.

Hi -- I found some articles about RP reops --- here are pdfs of the papers:

• Aortic valve–sparing operation for autograft failure after the Ross procedure
  Aschraf El-Essawi, MD, Jochen Sänger, MD, Stefan Ulrich, MD, Ingo Kutschka, MD, and Wolfgang Harringer, MD, Braunschweig, Germany
• Aortic root reimplantation for successful repair of an insufficient pulmonary autograft valve after the Ross procedure
  Rainer G. Leyh, MD, Theo Kofidis, MD, Stefan Fischer, MD, MSc, Klaus Kallenbach, MD, Wolfgang Harringer, MD, and Axel Haverich, MD, Hannover, Germany
• Valve-Sparing Procedure for Dilatation of the Autologous Pulmonary Artery and Ascending Aorta After the Ross Operation
  Paolo Masetti, MD, Victor A. Davila-Roman, MD, and Nicholas T. Kouchoukos, MD
• Valve Sparing Aortic Root Replacement for Dilatation of the Pulmonary Autograft and Aortic Regurgitation After the Ross Procedure
  Toru Ishizaka, MD, Eric J. Devaney, MD, Stephen R. Ramsburgh, MD, Takaaki Suzuki, MD, Richard G. Ohye, MD, and Edward L. Bove, MD

The first two are by german physicians/surgeons and may be particularly interesting for you in your search.

All the best

 

[Nancy]

My husband's aortic mechanical valve is 28 years old and still working well.

 

[RCB]

A tough decision to make

A tough decision to make

It is pretty hard for me to establish the facts....

Even an artificial one will need to be changed after 15 to 20 years....

but we ve been told that if a Ross is done properly it can last for ever (this I have managed to cross check with results from research)....

First you must establish the facts. Don't go on information relayed through your mother- Get the facts from the doctor, in writing would be the best!
In matters of health, you need to be "REALLY" certain!

Second, as Nancy said mechanical valves don't wear out! We have one member, mamoojr that is having surgery next month to fix her aorta. Her mitral valve was implanted 33 years ago and will be replaced, not because it isn't working, but because the newer ones are much better. She is living proof of how durable even the early valves were.

And finally what you have been told contains a conditional statement "if a Ross is done properly" with a possible outcome "it can last for ever". This is not a statement that I would have a lot of confidence in about a situation that is third hand at best.

If it were me, I would try to get the records and get a second opinion from someone I trusted. Good luck!

 

[JohnnyV_46]

Lifes a Gamble anyway...Talking about 2nd-3rd-4th surgery with Tissue valves...Sorry but who say's your going to make 60 anyways? I know statistics for "Normal" people say they are living longer. We're not normal. If I'm back in for another surgery in 10-12-15 years...thats 3650-4380-5475 days without having to worry about Coumadin.....Tell me that you all don't worry about it! You're hear talking about it all the time. I've gone weeks, months and forgot I even had a valve replacement! I chose a tissue valve 11 mos ago and I'm betting I'll choose another when this one wears out.
Don't hate me because I'm beautiful...I know everyone is entitled to their opinions....(JUST KIDDING ABOUT THE BEAUTIFUL PART)

 

[Turkey Hunter]

I'll think on this one before I reply.
Lot's of good points one way and the other !!!
Let's have a good debate !!

 

[ALCapshaw2]

Hi again,

I know that people are managing with the artificial valves and the option hasn't been discounted at all, but it is not the prefered option. The key is to establish how long this can last. Even an artificial one will need to be changed after 15 to 20 years but we ve been told that if a Ross is done properly it can last for ever (this I have managed to cross check with results from research). What I cannot find is information regarding the duration of the valve after a correction on Ross.

To avoid confusion and polarized debate, we need to be sure everyone is using the same interpretation of "artificial valve".

Artificial TISSUE Valves usually last 10 to 20 years, depending on type (porcine, bovine, cadaver) and age of the recipient at the time of surgery. Tissue valves tend to last longer in older patients (over 50, or 60, at the time of their surgery).

Artificial MECHANICAL Valves are designed to last longer than anyone could ever hope to live. Sometimes mechanical valves do need to be replaced, but that is usually for a secondary reason such as growth around the valve, or leakage around the sewing cuff used to hold the valve, or long term issues with Coumadin (rare but they 'can' happen).

'AL Capshaw'

 

[Karlynn]

To avoid confusion and polarized debate, we need to be sure everyone is using the same interpretation of "artificial valve".

Thanks Al, that's what I was trying to be clear about as well.

 

[Ross]

...but a debate is hijacking the thread. The man wants solid facts and nothing more about a Ross redo.

 

[tobagotwo]

Root expansion is a relatively common (and usually preventable) cause of failure for Ross Procedures. If the problem is the size of your brother's aortic root, which may not have been stabilized during the initial operation, then it is certainly possible to correct and stabilize the root and still save the valve.

One way of doing this could be with a dacron tube. If this is the issue, which I cannot really tell from your interpretation of your mother's interpretation of the Greek doctor's explanation , than I would say it's doable, and probably desirable.

Best wishes,

 

[Bryan B]

chrkol,

If you want an expert opinion I could give you my surgeon's contact information. I did all of my correspondence including sending him my most recent echo and cath cd's long distance from Nashville, TN (he was in Durham, NC). I didn't meet him until the day before surgery. He was very approachable...my first contact with him was when I e-mailed him. He called me the next day, we discussed my problem, and then he told me to send my echo to him. After viewing it he got in touch with my cardiologist in Nashville and told him what he wanted to see from the pre-surgery cath besides the check of the arteries. Didn't mean to ramble on...but my point is he may be able to give you a "2nd opinion" long distance and if nothing else ease your mind that your brother is getting good information. He is the director of pediatric cardiothoractic surgery at Duke Medical Center (3rd ranked heart hospital in US) and specializes in the Ross Procedure and pediatric heart transplantation (I figured if he can replace them he can fix them ). Your brother might even consider using him to do the surgery if he thinks the problem is correctable. Then your brother could take a holiday at our gorgeous beachs to recuperate.

Send me a private message if you want his contact info.

BTW Bob (tobagotwo) is spot on that root dilation is one of the more "common" problems if complications do occur in a RP patient.