Does anyone have any thoughts on the Ross Procedure?

[atomlo]

Has anyone had the Ross Procedure done on them? All i've read about about the Ross procedure on here is of people who are returning for surgery and not many people who have had it without surgery for a while. Does anyone have any thoughts on this or have experience with it?

 

[honeybunny]

I can't answer your question, atomlo, but I want to welcome you to the site. Hopefully you will get some some answers soon. Would you care to provide some more information on what you are facing?

Michele

 

[scott.eitman]

This may be unpopular with Ross Procedure fans, but my question is "why compromise one valve to repair another valve?" I just don't get it.

In 1998, when one local surgeon suggested the Ross Procedure, I ran it by Dr. Cozgrove's nurse. His reply was simply "Where did you hear about that, we no longer do that procedure". The CCF may still be doing them, but I never run into patients at the CCF who have had the Ross Procedure.

 

[atomlo]

Thanks Honeybunny and Scott. I'm 24 years old and I've had an aortic regurgitation since i was in a car wreck 7 years ago. My doctor has been checking on my heart every year since then and from that decided now (also with the side effects i've been having like shortness of breath) that it is time to replace the valve. The surgeon I'm seeing and the doctor I've been checking up with seem to want to do the Ross Procedure, but the more I read it doesn't seem like a good idea. The surgeon said theres a chance that I will only need one surgery. Although from what I've read that doesn't seem like it would be the case or if it is the Pulmonary valve replaced from a cadaver will cause issues.

The two valve disease fix for a one valve disease issue does seem counter intuitive, and from all the posts I've seen on here it hasn't worked well for the people posting. However, it seems like there have been changes in how the procedure is done in the last 20-30 years and from what I've read Surgeons who have done many have much better results. The surgeon I'm seeing has done many.

 

[pellicle]

I don't think there have been as many changes as you may like to think.

Fundamentally valves are terrifically sensitive, they are super thin and ultra easy to damage with handling. So pulling your healthy one is likely to damage or destroy the living tissue making it no better than a prosthetic. Rather than upset people with my views again just Google mine here. PM me if you aren't able to find them

 

[Marie-62]

Check out Adam Pick Google it.

 

[Warrick]

Certainly some very encouraging reading on positives for the Ross procedure, but then there is the potential for 2 valve problems instead of one, I think it's a dice roll that will either pay off or it won't. heck I know a guy whos waiting for a heart transplant after his BAVD tissue valve replacement and aneurysm repair was majorly fkd up by the surgeon

I've thought about this post a bit the last few days and although not the same it reminds me very much of LASIK eye surgery I had 16 years ago now,

it went perfectly and I have never ever looked back, never had any problems, I still tell people I see with glasses that the expense is worth every cent ,in last 16 years never googled it once and then last week I googled it for the first time and I was astounded on the amount of complications and bad stories from countless people, I didn't even know that the cut across my cornea is still not healed and never will
So it could have gone badly but it didn't-risk versus reward, would have certainly made me think twice if I went into LASIK today after reading the bad

 

[Agian]

heck I know a guy whos waiting for a heart transplant after his BAVD tissue valve replacement and aneurysm repair was majorly fkd up by the surgeon

Bloody hell! Wtf happened? How is that even possible?

 

[atomlo]

Thanks Pellicl, Marie, and Warrick. I read some posts i found on the Ross procedure that you left pellicle. Thank you for pointing those out its a lot of things to think about.
Adam Pick looks like a great resource, and will will be reading that. Thanks for the perspective Warrick. Also I think online there would be disproportionate negative reviews on the Ross Procedure as people it went well for have less of a reason to share their story.

 

[pellicle]

Hope it goes smoothly for you, no matter what you pick.

 

[sylviayasgur]

hi Atomlo, my husband, joey, is the patient, but i am on the site. joey had a rp on sept. 20, 2001 sone by dr. paul stelzer. over the years i've read pros and cons from many folks who have had a rp and those who have not. in the end, there is no perfect solution/fixer. you have to be comfortable with your choice in the end and it is certainly a very personal one.
what i have found, however, is that the surgeon you select is crucial in how the surgery goes and lasts. i cannot recommend dr. stelzer enough. he has been way ahead of his time and is a gifted surgeon, let alone a magnificent, kind man. many patients travel from all over to see this genius. if i could recommend one thing, it would be to have your cardiologist email or mail a disc of your results and info to him. i'm sure there are many great surgeons out there, but i (and numerous others here) swear by dr. stelzer.
please feel free to email me anytime: [email protected]. wishing you all the best, sylvia

 

[atomlo]

Thank you Pellicle and Sylvia. It's nice to here good things of the Ross procedure. I keep reading about Dr. Steltzer. The surgeon I'm seeing says he has done several hundred Ross Procedures. He said he can also do a mechanical valve replacement but is pushing the Ross Procedure. I suppose it may be because that's what he specializes in. I really appreciate you giving me your information to contact. If I think of something to ask I know I can contact you.

 

[spartangator]

I'd like to second a number of responses here, particularly the importance of being comfortable with your choice and going with the experienced surgeon. More practice means better outcomes, generally speaking, for all medical procedures.

The whole thing does come down to a series of choices in a scenario where no one can predict the future. One does one's best with the available odds. Fortunately, in the valve-replacement world, there are many possible solutions that work well.

To answer your initial question, though, I had the Ross procedure nine years ago, and my driver was about my age and activity level, trying to avoid further meds and surgeries. I'm only one person, of course, so there isn't much to extract from my individual experience, but things have gone well. I don't pretend to be completely serene about heart things every day, even now, but I do what I want activity-wise and keep up with my cardiologist, and the tests come back with good results each year.

Good outcomes are the norm with the RP, according to research tracking people over 20 years, cohort work of younger patients, and studies of more experienced technique, but it is declining in frequency and comes with real risk, as you and others mention.

The hard part is that there are not simple answers for everyone because we all weigh different factors differently. That being said, you've realized it's a wonderful community of caring people who are engaged and willing to share their perspectives respectfully and help where they can.

 

[pellicle]

Hi

Thanks Pellicl ... I read some posts i found on the Ross procedure that you left pellicle. Thank you for pointing those out its a lot of things to think about..

there is indeed lots to think about ... as one who takes what I say as being something I need to be responsible for in some ways I followed up on some of the links which Marie posted. They showed very favourable results. As those results were (I thought) clinic specific I thought I'd go look on more broad journal searching. I found these of interest:

https://www.ncbi.nlm.nih.gov/pubmed/26204690

CONCLUSION:

There is some evidence that, at least during the first 10 and 15 years after AVR, the Ross procedure provides a significantly lower reoperation rate in young adult and middle-aged patients aged < 60 years. This information may be of interest to the patients' or physicians' decision-making for aortic valve surgery.

and

https://www.ncbi.nlm.nih.gov/pubmed/24574445

CONCLUSIONS:

Compared with available aortic bioprosthetic alternatives in young adults with severe AS, the Ross procedure provides an excellent long-term option for patients with predominant severe AS who seek a durable operation without anticoagulation.

I think you need to engage with those few sentences carefully and ask how those highly specific words apply to you. Looking at key words:
young adult
some evidence
10 - 15 years
avoidance of anticoagulation

To me the Ross has its strength in offering solutions to youth who may be better served by being away from AC therapy (such issues as attention to pill taking, and being bound to a medical system at a young age). My own surgeon when I was 28 (same actual guy who did me at 10) was cautious about me being on AC "just yet" (as he phrased it back in 1991) put me on a homograft which was a living tissue type (not a antibiotic preserved type). I got 20 years out of that homograft and I would think that's about as good as one can expect from a homograft. Remember that is actually what the Ross is too ... its a specific homograft its your valve.

I feel that there is a lack of good evidence (good statistically based, not just picked from a clinic here or there) ot make a compelling case that you would get more than 20 years without reoperation. Certainly there are a few posters here who have had less ... you should seek out their posts and critically examine their cases and compare with your own. While there is the point that "bad news travels faster than good" and that success stories don't post, I think equally a balance point is that my own is a "success story" (with a few minor caveats) and here I am posting.

I think the points made here on picking an experienced Ross team is critical to success as there are highly specific skills needed in handling the removed valve to prevent failure. Look to my recent posts on how a valve morphology and biology actually is ... its stunningly interesting and fragile stuff. But then it was designed to be super thin, super flexible and spend its entire life immersed in fluid (a mix of oxygen carrying, nutrient carrying fluid filled with nano-machines to keep it clean and fed).

One needs to ask ones self if you are a gambler. Of course there is risk with EVERY decision, the point of this forum (to my mind) is for assisting you to see what all the possible risks are and evaluating them. This is not a simple task and also takes time.

I for instance spent the last two years (also busy working on my house) in evaluating my decision of if I should continue to live in Australia or come here to Finland and see. Now that my wife (the Finnish part of us) is passed away I am not entirely sure why ... but I decided that I should try.

Selling my house and moving to a place that (while I am familiar with it) is foreign and where I am a migrant with no access to "national health services" and a migrant who barely speaks the language is not a trivial decision.

BUT its all reversable ... and heart surgery is a one way trip.

So think carefully, weigh the odds, see how the age groups pertain to YOU, and (if you wish) discuss things here to sound out your views. Be cautious of anyone attempting to persuade you. I can assure you that I gain nothing from what ever you decide to do. I try my best to make my words express my feelings and convey my knowledge and experience - but not (most assuredly not) sway your view with any persuasion.

Best Wishes

 

[Warrick]

Bloody hell! Wtf happened? How is that even possible?

from what he told me where his arteries branch off his aorta are different to most of us and the surgeon never bothered to look at the scans, when the surgeon wrapped the dacron around the aneurysm he inadvertantly blocked an artery that was around the back out of sight , this was one of the main suppliers back to the heart muscle so this killed most of the muscle, I think he said he's at 18% capacity now and his heart rate has been up over 400 bpm, and his tissue valve is leaking like a sieve

I was meant to have this surgeon for my OHS but he was busy ... lucky, there are only 3 heart surgeons (they do public and private) at the main hospital in Christchurch so here it's not an option in a public system to shop around

 

[Agian]

That's f*cking negligence. He should sue. Seriously

 

[Warrick]

That's f*cking negligence. He should sue. Seriously

we can't sue here in NZ, we have an ACC (Accident Compensation Corporation ) system that we all pay into via car rego, employer levies and income tax, he got paid out 130K for medical misadventure,

a pittance I reckon

 

[Agian]

Are you sure? Is that what they told him? Coz I reckon it's ********.
I bet if he threatened to go to the media, or report the **** to the medical board, they would change their tune.
He ordered scans, exposing your friend to radiation, and then didn't look at them. So why did he do them in the first place?
They'd crucify him.

 

[Warrick]

thats how it is here, not the first "bad doctor" I've heard about, my Dad knew this guy with a mechanical in my home town-

http://www.stuff.co.nz/timaru-herald...sed-dads-death

the doctor got suspened for 2 years for "retraining"

I guess when theres only 3 surgeons they can't be one short for a "mistake", ACC is a goverment department and it would have to have been claimed thru the District Health Board so thats the top here
I think it comes down to complacency and perhaps a "god" complex on the surgeons part , don't know really , he reckons he's made peace with the surgeon....

I think the second half of that article speaks volumes

Now they reckon this lastest earthquake is going to cost 2 billion dollars wtf

 

[Agian]

This is much much worse.
The surgeon made his 'peace' with your friend so he wouldn't take it further.
The hospital paid him less than a petty bureaucrat's salary and got him to sign something to say he would keep quiet.
They lied to him. It's obvious.
Misadventure is when you're the one percent where '**** happens'. This is negligence.
It's a no brainer.