need advice about Ross Procedure

[Enudely]

Hi guys
I'm wondering what you all think about the Ross Procudure. My surgeon (who is Kaiser) suggested that I do the Bovine valve, but said "if you do your your research, and you want the Ross Procedure, I'll do it." He it said that it's a more complicated process to put in, but it usually lasts a lifetime. I don't know what's a bigger risk, having two operations, or having the Ross Procedure.....I'm going to write and ask the surgeon, but wanted to run it by you all...

 

[Tom F.]

The Ross is indeed very complicated surgery, but when it works it typically works very well. Dr. Jim Oury maintains the International Registry of the Ross Procedure at St. Patrick's Hospital (www.saintpatrick.org/ihi/Ross.html). At that site you can find a wealth of information about the procedure, and they can provide you with a list of doctors especially experienced in the Ross. The biggest thing is to find a doctor that has done many of these. My doctor is on that list, Dr. Robert March, and he has performed appx. 150 to date.

Some folks fear the Ross as well as valve sparing procedures because those are complex surgeries, but I would suggest you do your own research and come to your own conclusions. If you have questions the folks at the Registry are always helpful.

Just keep in mind that the Ross, just like every other valve surgery option we have, sometimes fails. That's just the way it is. I had a valve sparing procedure, but if they were going to take the valve my next choice was a Ross, and I was very comfortable with that decision.

The best of luck to you.

 

[Tom F.]

I just tried the link I mentioned in my earlier note and it did not work. But if you get into the website for St. Patrick's hospital you can find the registry from there.

 

[Tom F.]

I found a still better link to the Ross info, go to www.rossregistry.com , that is the best way to find current information from the Institute.

 

[Turkey Hunter]

RP

RP

Hi Tom.

I had my RP at Clevelan Clinic three years ago and am doing great.

I guess I'll start by saying my story can be found in the poersonal stories section of this site......that sums me up.

But I would like to mention that the RP is a very complicated sugery and I would spend as much time looking into surgeons if you are interested in this option as I would basic research.

There are alot of very qualified surgeon all accross the Country. Be safe and keep us posted.

Ben

 

[derekzmom]

There are some very knowlegable people at www.rossregistry.com who have alot of personal experience. My son may be having the Ross in the near future. We find out tomorrow. There is alot of information out there about ALL the different kinds of valves (who would have guessed there could be so many) and it is very overwhelming. From what I understand the donor valve (whatever it may be) usually has to be replaced. I will be talking with my son's PC tomorrow and will find out for myself how long the replacement valves usually last and let you know what he says.

Hugs

Allison

 

[MarciaB]

Hey Elena,

How long did they tell you the bovine valve would last? I hear some of them will go 20 years. Now, I know I've said that I never, ever want to do this again, if I could have gotten 20 years, I would have gone tissue. (The mitral tissue valves don't get near that mileage).

You are with Kaiser and I don't know if they'll let you go out of the system to find a surgeon. Unless your guy has done many, many of the Ross with a high success rate, well, it would really make me think hard about it.

Marcia

 

[Kenny F]

Marcia,

My surgeon says the bovine pericardial has an unknown life expectancy because hte history is relatively short, but 20+ years is realistic and they could indeed be permanent. It was my first choice. Homografts also are an unknown, but 15+ is realistic, and they too may last forever.

 

[stormrev]

Ross Procedure pending

Ross Procedure pending

Hi Elena and others

You're right - it's not an easy choice. My dad had a mechanical valve fitted at age 65 and ten years on is still going strong. My younger brother had the RP at age 35 and 7 years later is doing really well. I've managed to last till 46 but am now in the severe regurg and dilated aorta stage and am expecting surgery in the next few weeks.

I'm stll committed to the RP as having seen it work so successfully for my brother, but am having second thoughts sa a young 30 year old good friend who had the RP 6 months ago has been told his pulmonary graft is collapsing - has anyone else heard of this happening? When he asked his cardiologist, he said about 6/200 RP patients operated on by this surgeon experienced this problem, but only one had required reoperation?

Regards

Grant

 

[Turkey Hunter]

Grant,

As with any of the options out there for us. Each and every one of them have had some % of the recipients have problems early after the operation.

There have been mechanical valves recalled, there have been RP patients have problems and re-op within six months as well as homograph folks who have had problems as well. No choice is perfect......just the best choice for us, individually.

The option each of us choose is very personal and no one can really help us with the choice. (other than God).

Ben

 

[Gemma]

Hi Elena,
As Ben says, it is a very personal choice but I just thought I'd share my boyfriend Jim's surgeon's thoughts on the Ross procedure.
He said that if Jim wanted it he would do it, but in his personal experience it was generally more successful when carried out on people under about 20. This is because (as I understand it) your pulmonary valve generally is under less pressure than the aortic valve, and can get to a point where it is not strong enough to withstand the pressure when placed in the aortic position, and will not get stronger over time. Apparently this is what happened to Arnie Schwarzenegger and he ended up back in surgery 48 hours after his Ross procedure to have an emergency AVR done. Also the surgeon felt that basically, why do 2 valve replacements when you only need one - potentially doubling the chance of complications. I do think things may be different this side of the pond though, just the fact the population is smaller over here means every type of surgery is less common.
I suppose that what you really need, whatever you decide, is a surgeon who is confident it is the best choice for you and that he/she is the best person to do it! As I have been hearing a lot lately, the doctors have lots of patients but you only have you - and you should make sure you are 100% happy with everything that's happening.
Good luck & happy holidays
Gemma.

 

[Kenny F]

Gemma,
My surgeon echos exactly what you said about the pressure differences and doing two valves. It must be a school of thought.

I think it is very well said 'you need a surgeon who is confident it is the best choice for you' - they all are from differing schools of though, and all focus on and have preferences for certain types. Mine absolutely loves homografts when he can get what he needs, and his primary weapon is the bovine pericardial. He would do whatever, BUT it was obvious that those were his preferences.

In talking with my cardio's nurse, it seems many surgeons with young fen/phen valve failure patients automatically use mechanicals - almost a production line, it seems.

 

[Heather Fisher]

I thought Arnold blew out his valve by getting on a exercycle too soon after surgery. I'm sure if you push too hard, too soon you would have problems. I had a Ross at age 46 (almost 47) this past July. So far so good. It's a difficult decision to make. No choice seems to be perfect or without some form of risk. Just gather as much information as you can and make the best informed choice possible. Feel free to e mail me should you have more questions you think I may be able to help with.

Heather

 

[Susan Allen]

Hi Elena,
I just had the Ross Procedure done 10/23/03 at the Heart Hospital of Austin by Dr. Stephen Dewan. Mine went great!!! I went in for 7:30 surgery and out by 12:30. I was off the vent by 4:15 that afternoon. That was a Thurs. - I would have been allowed to go home that Sun. but did not have a surgeon to pull the chest wires. I went home Mon. I have been back to work full time since Nov. 25th. I had an echo done 3 weeks out of surgery and can't even tell I had surgery - heart is great. Had my last card. visit yesterday and my heart rate is down and blood pressure better than ever. I did have a fluid build up complication which I have under control with diet (no sodium).
I am sOOOOOOOOOOO lucky and I realize that. The Ross is complicated but if you do your research you will see many improvements have been made ( I am significantly overweight and would not have been a good candidate in the past I am also 42).
The key is the surgeon. Be sure to find one who is really really experienced.
Good luck and best wishes.
Any questions - just ask
Susan Allen

 

[Enudely]

Hi Everyone
Thanks for the great advice. I think I'll go with the Bovine valve for now, and when that wears out (20 years would be great!!) Maybe I'll try the Ross. My surgeon thinks the Bovine is the best choice. He said he will do the Ross but that it's very complicated and also he would be ruining my perfectly healthy pulmonic valve......
surgery in 27 days!!

 

[Susan Allen]

Congratulations Elena,
Don't you feel better now the decision has been made. I 've heard and read good things about the bovine valve. The most important thing is you feel good about the decision and confident in your surgeon.
Good luck and all my prayers. You'll come through with flying colors.

Susan Allen

 

[medtronic of borg]

food for thought

food for thought

most surgical stats are cabulated as succesfull if the pt live 6months post-op. Also why distroy a perfectly good pul. valve? Two damages do not make it any better. Also new procedures may not turn out to be what you expect when all the numbers come in. I had one surgery were they didn't have any stats on this approach. After a couple of years they made significant changes do to survival rates. It was estimated then that any pt this was tride on in my condition(severe) had only a 1:18,000 chance of survival.

Med

My new surgions, are still marvaling at my survival.