Info on Ross Procedure vs. others

[ks1490]

Hi,

I'm newly-diagnosed with aortic regurg and am just starting to learn more about the condition and potential treatments. I still have no symptoms but surgery could be a reality in the future. From some initial reading of these wonderful forums as well as some web-surfing, I've read a bit on the advantages/disadvantages of tissue vs. mechanical valves. I've only read a little about the Ross Procedure and was wondering if anyone could point me to some old threads on these Forums or a good article/website with more info about the Ross Procedure and comparing it to tissue/mechanical valve replacements. Is it only for certain types of people/conditions? From my initial reading, it sounds like it would be preferable to having a prosthetic replacement.

Many thanks in advance for your replies.

 

[Karlynn]

It's good to prepare ahead of time, even though you don't have surgery in your immediate future.

I will say that not everyone has symptoms prior to their surgery, or at least symptoms they are aware of. Often times the change is so slow, that the body and mind adjust. It's only after surgery, when you are feeling so much better that you realize you did have symptoms, but had just become used to them over time.

And some people just plain don't have symptoms. This is why it's important to keep up with regular annual (or 6 mo) checkups and tests with the cardio.

We have some good Ross experts, so they'll be around shortly to help you out.

 

[Lynlw]

Welcome, here's a pretty good site. you'll have to register (I believe) but I think they explain things well http://heart.healthcentersonline.com/pediatricheartsurgery/rossprocedure.cfm

It's good to be prepared instead of having to figure everything out in a panic. good Luck, Lyn

 

[OldManEmu]

Some info on Ross's

Some info on Ross's

Here is the link to a US surgeon that specialises in the Ross it explains it reasonably well. http://ps4ross.com/index.shtml This link contains some stats on Ross's http://www.hsforum.com/stories/storyReader$1475

 

[Paul_N]

Welcome to the site. I had a Ross in October of 03'. A little of my history, I'm currently 42 and have a wife and 2 teenage daughters. One turned 15 in January and the other turns 14 in July. Been married for 22 years and my wife and kids are my whole world. I joined the local fire department 18 years ago. Before surgery, I served as Asst. Chief and had been in that roll for roughly 5 years before surgery. I also serve on our department at work ... an industrial brigade. I'll still serve on both departments. This played a big part in making my choice, because I wanted to continue to do those things. Another piece that weighed in was based on my past experiences ... I'm pretty much a klutz and have bumps and bruises at any given time. I discussed all that with my cardio and surgeon, and they recommend the Ross. Like most everyone else, I'm still doing exactly what I was before surgery. I'll be honest with you ... if or when the day ever comes that I might have to do this again ... I'll go through the whole process again of where I am in my life at that moment and go with what makes the most sense at that time.

I'm not going to try to convince you of one procedure over another. This is ALL up to you. I'm no expert on any of it, but I know what worked for me. The one thing I can say about the RP is it is a bit more technical and requires more time on the table. You'll have to weigh your age, health and all that in too when choosing.

At the end of the day, the choice you make will be the right one because it will be the one YOU make. Also remember no valve or procedure comes with a guarantee. But the advances they continue to make around OHS are amazing. Who knows what this will all look like in 5-10 years.

Bottom line, this is absolutely something you can do when the time comes. You'll be okay. Trust your doctors. In the mean time, if you hear something that just doesn't seem to make sense or confuses you, challenge them. Trust me ... they want you to be as informed as you can be. If something still doesn't make sense, bring it here and bounce it off this group or seek a second opinion.

Good luck to you and keep doing your homework.

 

[sylviayasgur]

hi ks1490,
my husband, joey, had his rp done at beth israel by dr. paul stelzer in 2001.
if you do a search on this site, you will find many threads on the rp.
where in ny do you live? there are so many options open to you....
as everyone here will tell you, in the end it's what feels comfortable to you and the doctor you find you trust most.
go out, consult with several surgeons.... there's dr. colvin at nyu who does a great minimally invasive surgery, meet dr. stelzer as well... we are very partial to him... and ask your cardio to recommend others. it's worth the time.

please email me anytime with any questions : [email protected]. i'll be happy to chat.

good luck and i hope this helps a bit for now,
sylvia

 

[tobagotwo]

Here are some discussions of pros and cons, including in regard to the Ross Procedure. If you don't have a progressive connective tissue syndrome, the Ross Procedure can offer the best of both worlds, longevity with no requirement for anticoaculation therapy.

http://www.valvereplacement.com/forums/showthread.php?p=146989&highlight=Considerations#post146989

http://www.valvereplacement.com/forums/showthread.php?p=146878&highlight=Considerations#post146878

Best wishes,

 

[sylviayasgur]

both great summaries and descriptions by bob and paul!!!

 

[ks1490]

Thanks all for the referrals. I'll do a little research and will come back with more questions if I have them. Sylvia, I may take you up on your referrals to the Drs. you mentioned.

 

[baldstuart]

I had my Ross Procedure done on 7/20/2005 at the University of Utah Medical Center. I am 41 years old in March and can't imagine what my life would be like if I hadn't done the surgery. My two boys (10 and 12) and my wife were more nervous than I was about the whole ordeal. I actually had two surgeons work on me while I was on the table. Dr. Bull and Dr. Hawkins (Hawkins is a pediatric cardiothoracic surgeon and has done hundreds of RP's on children) and they did a wonderful job on me. I would offer similar advice that you had already seen. Become informed about pro's and con's. Make sure your surgeon is very capable and make sure your cardiologist weighs in on the RP for you. It is not for everyone, and you have to be a candidate, but if you qualify, I would recommend it over any other valve replacement option. This is based on my own experience and my own opinion. I didn't realize how bad off I was until the next day after surgery!! It was amazing and I feel like a 16 year old now. Good luck.

 

[Perry]

Ks1490,

Welcome to the group. Since some of the folks that have replied to you are the same that have replied to me - please check out my thread also under valve selection "My Valve Choices - two weeks out ". Except now I am 9 days out.

I was diagnosed with AR also about 5 years ago. My valve appears normal, the surrounding aorta appears fine (last time in Nov.) so this apparently makes me a good candidate for the Ross Procedure. One more option for me and perhaps for you when the time comes.

Several choices exist for the AV replacement. The Ross transplants your living Pulmonary valve into the aortic site. Your transplanted valve will remain alive in it's new home (perhaps the best benefit of the Ross). Your pulmonary valve is then replaced with a human donor or perhaps a tissue valve. If and when that new pulmonary valve starts to wear, you may not have to deal with it urgently as you would if it was in the aortic position (the 2nd Ross benefit). So the Ross could last a long long time. Obviously, the Ross does turn treatment of one bad valve into a two valve procedure.

Just a short positive summary. You have been provided good links and you found the right place for info. There are pros and cons to be considered with every choice and lifestyle and such should be considered as well. But I am grateful that it is a choice of what to do and not a question of if they can do it.

Be well,
Perry

 

[LuvMyEvan]

Good Luck!

Good Luck!

I just wanted to say good luck in making this tough decision. My son had the Ross-Konno procedures as an infant (4 1/2 months old) and there was no other option at the time.

I know that what you'll find out there as far as the Ross (on the downside) is the chance for re-op, especially of the donor pulmonary valve. There is encouraging news out there recently, though, that you may not find unless you search for it properly. They are now doing pulmonary valve replacements by cath if it's a non-native valve. The FDA has not yet approved this for use in the U.S. (it has been done at least 100 times in Europe and Canada, however). There are a couple cases of this being done in the U.S. for patients who were determined to be too sick to undergo open-heart surgery, though. All cases thus far have a 100% survival rate.

So there is hope out there even if you elect to have the Ross-Konno.

Having said that, my son is due for his next check-up on Mar. 15th and they will decide if it's time for an MRI to get measurements for surgery this coming summer... or if it can be put on hold yet again. He's been "on hold" for nearly 4 years now despite them thinking his donor valve would maybe hold out for another 6-12 months at that time. He loves to prove them wrong, I guess.

My point is, you have to make the decision that's best for you. The technology is always changing. Some things you may wish to include in your search of the valve replacement by cath:
semilunar, transcatheter valve replacement

I have a draft of a paper written by one of the pediatric docs who hopes to be among the first in the country to get approval from the FDA for clinical trials. I don't have permission to post it, but his information and the research sounds very promising.