The Ross procedure - best of both??

[Barry]

Hi everyone,
First, thanks for this site, it is great to read about others going through the same thing.
I am due AVR in the next couple of weeks and have been reading the pages of supportive and informative discussions on the pros and cons of the different types of valves (mechanical vs tissue) replacements that yous have been posting.
Due to my age (36), state of the aortic root and what I want to do (play sport) my cardiologist recommended the Ross procedure with an experienced surgeon (Mr Hasan in the Freeman, Newcastle).
I am attracted by the advantages that this procedure offers: No warfarin and reasonable reoperation rates:
85% to 90% freedom from reoperation at 10 years.
And 75% to 80% freedom from reoperation at 20 years.
+ The optimists out there say that with medical advances; in 15 yrs time any reop on the pulmonary wont require OHS.

Seems to good to be true? There are posts out there from people the same age who have not mentioned / considered the Ross and I just wanted to know if I am missing something??

Thanks,
Barry

 

[dfelder]

I had the Ross in 1997. To me, it sounds like your doctor is being VERY optimistic.

 

[Allisoninoz]

Hi Barry,
I'm 42 and am booked in to have the Ross Procedure on Tuesday 22 February (!!!) for my congenital BAV. My surgeon is Peter Skillington, who has done more than 300 Ross Procedures. He believes I am a good candidate given my age and circumstances. I asked him straight out what he would choose for himself and he said he would go Ross providing it was with a very experienced surgeon. He said the reputation of the Ross suffered somewhat in the 80s and 90s as an increasing number of surgeons inexperienced in the procedure began doing it (and on patients who were not ideal candidates). Skillington has refined the procedure to ensure greater aortic reinforcement. He also told me that 5% of RP patients develop some mild to moderate narrowing of the pulmonary valve but only one of his 300 patients has required further surgery for this issue.
I suggest you read as much as you can about the RP (there is plenty online) and find out as much as you can about the surgeon and how many he has done. I haven't 'interviewed' other surgeons as others have suggested as I was recommended Skillington by my cardiologist and several other specialists in whom I have faith.
Good luck,
Allison

 

[Duffey]

Barry,
member BryanB, who is undergoing surgery this coming Monday, had the Ross Procedure performed about six-seven years ago. If you check some of his posts concerning his experience, you will find another perspective on the Ross.

 

[texasmike]

Ross Procedure

Ross Procedure

I had a Ross procedure November 2001 at age 55. Approximately 7 years later my aortic root began to dilate, stretching the valve and causing some regurgitation. After observing this for another year, my doctors reached the conclusion that the aortic valve, root and a portion of the ascending aorta needed to be replaced. This is not what I was let to believe would be the outcome of my Ross!
It is wonderful to have your heart working fine and not being tied to any medication, but it is not so great facing a second OHS. Well, mine was performed last April, and this time I opted for a mechanical valve.
My advice with the Ross is to be certain your surgeon has performed many of this type of operation, and then to determine how the root will be stabilized/strengthened so that it doesn't begin dilating after 8-10 years. When they transfer the pulmonic valve, they also transfer the root that goes along with it. Apparently this root is not used to the additional pressure of an aortic valve, and unless it is reinforced it may well dilate.
I am not against the Ross, but would encourage you to check out what will be done with the new aortic root. It was not reinforced during my first surgery, and this resulted in a second re-do operation.
Good luck!

 

[normofthenorth]

85% to 90% freedom from reoperation at 10 years sounds a little optimistic for a 36-year old, but 75% to 80% freedom from reoperation at 20 years sounds nuts to me. Absolutely positively wonderful if true, and misleading and maybe actionable if not!!

 

[vprnet]

Barry,

I looked deeply into the Ross read alot of material and THE book. Met with THE top ROSS surgeon in NYC. Considering the surgical risks, extra time on the table, post surgical risks, the fact that both the AOR and PULM valves would be compromized, the outcome of some fellow VRO members and the former gov. of CA I decieded to go with the ON-X mechanical, a valve hopefully for life. Feel fantastic, as fit as I was 20 years ago, on warrfin no issues -cut myself all the time with tools, and waiting for ON-X to complete the PORACT for FDA approval for significantly reduced anti-coagulation therapy. My decision priorities - 1) to survive the operation, 2) longest possibility for life without repeat AOR surgery, 3) highest quality of life and freedom to be active, 4) minimal post sergical medications. Think about yours and all the best wishes in your choice and surgery.

 

[Barry]

Thanks for your thoughts guys, I have been asked to come into the hospital tomorrow for the op on Monday (22nd Feb). I will still go for the Ross but ask about the root support.
All the best Alison for you on the 22nd!

 

[Lynlw]

Thanks for your thoughts guys, I have been asked to come into the hospital tomorrow for the op on Monday (22nd Feb). I will still go for the Ross but ask about the root support.
All the best Alison for you on the 22nd!

Wow that was quick. You will be in my prayers.
As for the Ross, It seems to be one of the surgeries people either have GREAT long term success and others need surgery much sooner than hoped for. It sounds like you are doing what needs to be done to have the best chances of a long successful outcome. The Ross is definately one of the surgeries that a surgeons experience plays a big part in having a great outcome, both in doing the actual surgery and being able to recognise who IS and who is NOT a good candidate.

As far as replacing the new pulmonary valve, there are a couple good things, first is for the most part tissue valves tend to last longer in the pulmonary side than they do in the Aorta, -especially in adults or at least kids that have reached their full height, so won't outgrow it- mainly because of the lower pressure.
They also are already replacing tissue Pulmonary valves by cath (the Melody valve is already FDA approved in the US and has been used around 10 years in the UK and Europe)

I don't know if you want to read any articles, OR just relax as much as possible and enjoy your weekend..(as much as you can relax with short notice so probably busy making arrangements)
One of our members StretchL http://www.valvereplacement.org/forums/member.php?2324-StretchL did ALOT of research before he chose to have the ross and his surgeon, you could read some of his older posts that had alot of information or do an advance search for ross with his name.
Here is a link to his site where he put together all the papers he read http://www.stretchphotography.com/avr/documents/ BUT he had his surgery about 5 years ago, so some may be outdated already.
Good Luck. Will someone be able to update us before you can get online?

 

[spartangator]

We'll be thinking of you, Barry. How to approach one's surgery is always a tough question, and we're blessed to have multiple options that work.

 

[Barry]

Hi All, sorry about that - I should have got someone to update the thread.
I made it back home last night from the hospital following the operation last week. To be honest it was difficult for me to feel sorry for myself being in the same ward as 60/70+ year old guys who were having a hard time of it but still laughing and joking their way through.
And for all the bad things that are said about the NHS in the UK I havent had one bad experience, from the cleaners to the surgeons - everyone has been brilliant.

Lyn - I have seen the relative polarised view on the Ross in here, - either no problems or problems cropping up in a quite short space of time. Also interestingly Newcastle hospital (where I went) has put in several replacement pulmonary valves by cath with good results so far - so that side looks promising.

thanks all and see you around.
Barry (still a bit dazed - so please forgive any spolling errors etc.)

 

[Duff Man]

WOW. Welcome back!

Please tell us, did you have a bicuspid aortic valve in addition to the bad aortic root?

 

[Lynlw]

Thanks for the update. I'm glad to hear things are going so well. Make sure to eat, breath, walk and nap. but make sure you do NOT over do. Keep in touch please.

 

[Bina]

Barry, welcome to the "other side".

 

[jdsmithii]

Ross Experience

Ross Experience

I thought I'd throw my 2 cents in. I had a Ross done in Syracuse NY in September of 1997 when I was 17, on the first day of my senior year of high school. I liked the concept of not having to take wayfarin, and the active lifestyle. Now, 13 and a half years later, I am pleased to say that the last 13 years have been active and fun. I have taken up basketball, ran, and done pretty much anything I wanted, that is, until this past November when my cardiologist diagnosed me with a 6 cm aortic aneurysm.

March 23rd, I will be going in again for a mechanical aortic valve and conduit. I agree with others, I am only 30, I don't smoke or abuse my body, and this is a shorter expectancy than I expected, and the doctors forecasted nothing about an aneurysm. Food for thought.

 

[normofthenorth]

I may be wrong, jdsmithii -- It does happen! -- but I'm guessing that regardless of your valve choice in 1997, no surgeon would have replaced any part of your Aorta back then, if it looked healthy at the time. Over the past 13 years, it went downhill (maybe from Connective Tissue Disorder) and it now needs surgery -- but those facts might be exactly the same today, even if you'd opted for the "lifetime" mechanical valve, with the attendant Warfarin. A mechanical valve would still be in good shape, but your Ross valve may also still be in good shape. The decision to replace it with a mech valve now may mostly be based on preventive maintenance, to stave off the next surgery.

 

[daveguy14]

I thought I'd throw my 2 cents in. I had a Ross done in Syracuse NY in September of 1997 when I was 17, on the first day of my senior year of high school. I liked the concept of not having to take wayfarin, and the active lifestyle. Now, 13 and a half years later, I am pleased to say that the last 13 years have been active and fun. I have taken up basketball, ran, and done pretty much anything I wanted, that is, until this past November when my cardiologist diagnosed me with a 6 cm aortic aneurysm.

March 23rd, I will be going in again for a mechanical aortic valve and conduit. I agree with others, I am only 30, I don't smoke or abuse my body, and this is a shorter expectancy than I expected, and the doctors forecasted nothing about an aneurysm. Food for thought.

This is one of the reasons the Ross has fallen out of favor among non-children (even at 17 I don't count you as a child). One can also avoid warfarin by getting a biological valve, such as a cow valve, and not just a Ross procedure. It's true that a biological valve probably would not have lasted 13 years in someone as young as yourself--perhaps 8-10 is more likely. But many doctors are beginning to think that the extra 3-5 years a Ross buys you is not worth the added complexity of the Ross and the introduction of pulmonary valve disease. I'm not sure to what extent, if any, the Ross plays in aneurysms.

The Ross may be right for some people. It's still the gold standard for children, whose native pulmonary valve will grow in the aortic position. And it's also popular among child-bearing-age young women, for whom an extra 5 years off warfarin can make a huge difference. But there's no free lunch, Ross or otherwise.

 

[JUST-WAITING]

Considered the Ross

Considered the Ross

Yes I considered the Ross in detail - due to the fact that my surgeon is an experienced Ross surgeon- Even my cardio doctor suggested the Ross- But when I talked with my surgeon - he hesitated over the Ross due to my being 52- The hesitation in his conversation was my final decision- I went with a a higher tech ATS "horse valve"-
if I had been younger I probably opted for the Ross-

 

[DeuxofUs]

I am seriously looking into it... and will go to the BEST doctor for it. For some reason... my gut is telling me to do this procedure and very strongly I might add. I have no other heart issues other than my crappy valve.

 

[andyabernethy]

Hi Barry - I am 37 years old. I had the Ross Procedure last year (3rd March 2011). Operation was a great success. Early days obviously in terms of whether I will need a repeat surgery however I was quoted similar percentages regards the risk of it over time. At the moment I'm on no medication and feel great (fitter than ever). Private message me if you have any questions.

Thanks
Andy
Manchester, UK