mechanical aortic valve or ross procedure?

[mmarshall]

I was born with a heart murmur which basically is a bicuspid valve. I am 5'9 and weigh 158 and 31 years old. I'm in great shape and work out about 3 to 4 times a week with cardio and weight lifting. I am not showing any signs of fatigue...well none that are obvious to me...since I was born with a murmur...I really don't know what slight fatigue is...lol But after getting my check up...which was put off for too long...we have discovered that my aortic valve is starting to catch up with me and there are concerns to the current size of my left side of the heart. I have talked to a surgeon and the two options we discussed are mechanical valve replacement or the other...which he is recommending...the Ross Procedure. I have read all about the mechanical valve replacement and the need/requirement to be on blood thinning medication for the rest of my life. I am kind of skeptical about that given my age and active lifestyle. But I am not too sure about the Ross Procedure either because with a homograft valve....I don't want to worry about surgery again in the next 20 or so years. Just trying to get feel and other opinions on what some of you guys might suggest. Since we are the ones actually having to go through this or have gone through this. Thanks

 

[Bionic Valve Tim]

Your situation is very similar to my own, including age, lack of obvious symptoms, and lack of frequent check-ups

The standard answer--and rightly so!--is that picking the valve is a very personal decision. There are plenty of patients here who can weigh in on both mechanicals and the Ross procedure. It's a stressful decision, but I think you have to look at it like a no-lose proposition: with either choice, you're going to get a good valve and (at least in my case) a realization that you were feeling more fatigued than you realized

I decided to discuss my concerns with the surgeon and cardio and then I went with their recommendation. You'll learn a lot poking around here and you'll probably have a whole new list of questions to ask the surgeon.

Welcome to the site and keep us posted as to your decision and surgery!

Tim

Edit: Pam makes a good point. If warfarin is a big factor in your decision, be sure to take some time to learn about the facts vs. myths of anticoagulation so that you can make an informed decision one way or the other!

 

[tobagotwo]

Until some of our Ross Procedure folks swing by, here's a link to the Ross Registry: http://www.rossregistry.com/fcMain.asp

And some studies: http://www.shvd.org/file/Ross_2.htm

See also Burair's recent thread: http://www.valvereplacement.com/forums/showthread.php?p=119584#post119584post119584

Best wishes,

 

[Granbonny]

Welcome

Welcome

We have lots of Texas members on board. sure they will chime in soon.... You say you are afraid of coumadin..but, do not want a repeat of surgery?......Hard decision to make..Take time to read our coumadin threads.....Yes, I agree, you are young to have to remember to take that pill, once a day..for lifetime...On the other hand, if you do worry about having another valve replacement in 15-20 years..You will still be young.And I'm sure you would be fine with a second surgery.....Just remember, it does take a long time to recover...Most feel pretty good. 6 months post op...And you do need family around..to help with first few weeks home. Again, welcome..and feel free to ask any questions. that's what we are here for...Bonnie

 

[Karlynn]

Welcome,
I had my mitral valve replaced at 32 years old - that was 13 years ago. A mechanical valve was chosen, at that time, because I was young and felt that a life on Coumadin was "safer" than additional surgeries. I also had a young family at the time and additional surgeries would have really "cramped my style." A mechanical valve does not guarantee no re-surgery, but when you are young, a tissue valve does. However you don't have to take Coumadin. It really is a decision that only you can make, with regards to your current life style and your view of what your future may hold. We have many Ross folks here who can weigh in on that choice. I don't know a whole lot about the procedure, but it seems like quite a viable alternative if you qualify.

We have very active Coumadin users. We have marathoners, triathletes and cyclists here, to mention just a few.

 

[perkicar]

Because of my history of radiation, a mechanical valve was recommended because Dr Lytle "really didn't want to have to reoperate" (but as they say, it's no guarantee.) He is concerned what he will encounter w/regards to scar tissue once he opens me up, and who knows, he may find things better than he anticipated and give me a tissue valve (although I'm not going to make any bets on that LOL). I'm 47 and could certainly tolerate another surgery, but I'm also feeling like one OHS in my lifetime will be enough to add to my library of procedures. If I have to do it again, I'll deal with that then.....

 

[Mary]

If you're unsure what the Ross Procedure is, you might want to check out the Reference Forum where PapaHappyStar posted a power point presentation by Dr. Paul Stelzer. Stelzer is different than most Ross surgeons in that he only does the procedure on adults.
The thread is a good place to start looking at information.
Good luck!

 

[PapaHappyStar]

Hi,

I had the Ross Procedure done recently. Same age and body type too. I am pretty physically active as well but now realize that I was more affected by the aortic stenosis than I had realized before surgery.

The homograft replacement in the pulmonary should outlive a homograft or a tissue valve in the aortic position ( less wear and tear on the right side ) and the pulmonary valve in the aortic position is the best alternative at the moment to a native valve. This is why the Ross Procedure is perhaps advisable in younger patients needing valve replacement, the (published average) incidence of reoperation is around 20% in 20 years. There are some caveats: If you have primary regurgitation ( i.e. your valve leaks rather than blocks blood circulation ) than you might be more likely to have post-operative root dilation leading to progressive leakage of the new aortic valve. The incidence of this varies with the technique and surgeon -- the best RP surgeons have very low ( published ) incidences of re-operation -- I posted a talk by Dr. Paul Stelzer of Beth Israel here:

Paul Stelzer on the modified Ross Procedure

There are also some links to papers and books from reading I did before my Ross here:
http://www.valvereplacement.com/forums/showpost.php?p=110697&postcount=1

The pulmonary homograft holds up well and there are techniques to ablate or replace it via catheter if it starts to become blocked.

I ddint go with a mechanical mainly because of lifestyle issues but as people mention these are not insurmountable -- there is speculation that there may be some damage to blood cells from the relatively abrupt closure and sharp edges of mechanical valves, this may have neurological effects besides being a factor in making mechanical valves thrombogenic.

All the best to you as you make your choice, keep updating us with your progress.

Regards,
Burair.

 

[skimomck]

I thought I better chime in. My son is having valve replacement surgery May 1oth(Mayo Clinic). He had his Ross four years ago and has been having issues with pulmonary stenosis in the homograft for some time and since January he has been symptomatic and now has severe aortic insufficiency and his aortic root is dialated to 50mm and also needs replacing. The recommended plan is to use mechanical valves to replace both his aortic and pulmonary valves. They are planning on using a valved conduit for his aortic valve. Teddy is opting for porcine valves due to his reluctance to be on Coumadin and not wanting to change is current very active lifestyle. Everyone involved in his case is working to convince him otherwise and is trying to make him better understand the risks of having additional OHS's. Even though he is a very bright, at age 20 he lacks some insight into the risks of multiple surgeries and thinks he is rather invinsible. Anyones insight at this point would be helpful. I also thought others considering the Ross should be aware that they do not always hold up for as many years as we had hoped.....Cindy

 

[Heather Fisher]

I had a Ross procedure done at age 46. So far so good. I'm happy with my choice, although it was a difficult one to make. Same thing here...aortic stenosis. I also had a coarctation done at age 4. Just find a surgeon you are happy with and research as much as possible on this site. What ever decision you make will be the right one for you!

Heather

 

[dcpickle]

i haven't posted much lately, but since the RP has been mentioned i thought
i'd chime in.

I studied my options before surgery and found that a Ross Procedure offered a sort of compromise between a tissue valve and a mechanical. It has the hope of "long" life without surgery and without coumadin. while it's true that coumadin is not the monster some say it is, it is not without risks. I have a history of an ulcerated esophagus which could have ben a problem with coumadin. Plus I hated the idea of another pill with no hope of getting off of it.

If not having a repeat surgery is really what's important to you, then you must choose a mechanical valve. I chose a Ross and now I feel great. I'm slowly getting off the BP meds. Someday I may be med-free!

Those of us who had good outcomes are naturally very high on our particular valve type, surgeon, etc. I'm no exception. we all agonize over valve choice, but afterwards, most of us seem happy with what we got! Just be thankful you HAVE a choice, and that they will all work!

Good Luck!

 

[MarkU]

I had a congenital BAV that was discovered when I was quite young, about five years old. I had it monitored over the years, but was advised to delay surgery until I became symptomatic, which they predicted to be in my mid-to-late 40's.
In the meantime, I led a very active lifestyle, including football, wrestling, tennis, competitive swimming, bodybuilding, etc.
As predicted, I started becoming symptomatic at about 46. Shortness of breath, chronic fatique, etc. At first I attributed the symptoms to work and travel related stress, and continued to push myself hard physically in my workouts. I waited about six months before I called my cardiologist, which was a mistake. My valve had started to calcify and I had developed left ventricular hypertrophy.
Based on my research and my doctor's recommendation, I decided on a mechanical valve. I figured the risks associated with the Coumadin were less than those of additional surgeries down the road (plus, a tissue valve does not guarantee you won't end up on Coumadin anyway).
I feel confident that that I made the right decision in my situation. Even though my surgery went very well, it is nothing I would want to go through again by choice. It was bad enough going through it at 47 and in good shape - I wouldn't want to do it again at 67 or 87, assuming the tissue valves would last 20 years.
I could tell an immediate improvement in my breathing after my surgery, though still took about nine months to feel like I was fully recovered from the surgery. AVR is major surgery - make no mistake about that - it puts your body through a lot of stress and trama.
Since then I have once again been able to lead a very active lifestyle. I have given up the heavy weights & bodybuilding, but have become an avid triathlete working out five to six times per week.
I am finding that my limitations now are not heart-related, but due to aging - sore knees, longer recovery times, etc.
Follow-up echocardiograms have indicated that the enlargement of my left ventricle has reversed itself in the past couple of years, no doubt due to the function of the mechanical valve. Another good sign is that all the aerobic exercise has helped to bring my resting heart rate down about to about 49-50 bpm, with my blood pressure at 104/70, so at least my pump system is working efficiently!

Mark

 

[ALCapshaw2]

Welcome aboard Marshall !

You did the right thing in getting evaluated. Heart Enlargement is a KEY indicator that surgery is needed to (hopefully) prevent permanent damage to your heart muscles / walls.

Living with Coumadin has not been that difficult for me and I still do a lot of yard work cutting trees and push mowing a couple of acres. MY main concern is going OFF Coumadin for other invasive procedures such as colonoscopy or endoscopy and of course other potential surgeries.

You may want to also investigate the latest generation Mechanical Valves such as the On-X and St. Jude Regent which were designed using the principals of Fluid Dynamics to minimize turbulence and the potential for clot formation. Studies are currently underway in Europe to see if Aspirin Therapy alone provides sufficient clot protection using these newer valves. In the mean time, it may be possible to get by with Lower levels of anticoagulation (INR) with these valves vs. the older style mechanical valves. That would be a good issue to discuss with your surgical candidates.

Best wishes making your choice. Whichever way you go, I recommend proceding as soon as possible to limit and hopefully prevent permanent muscle damage from your enlarging heart.

'Al Capshaw'

 

[catwoman]

Several people around here have had Ross procedures at Presbyterian Hospital of Dallas.
I live in Aledo, 20 miles west of downtown Fort Worth, and chose to go to "Big Baylor" near downtown Dallas rather than having surgery in Fort Worth. I grew up in the Lake Highlands area of northeast Dallas and my parents & both sisters still live in that area. Being at a hospital close to my family was important.
I chose a St. Jude valve rather than tissue. My father-in-law had MVR in 1978, got a porcine, and it failed in late 1989. He got another porcine during a procedure that included another valve replacement, aorta repair & 4 bypasses. I was diagnosed with MVP a couple of months later.
Mechanical valves aren't 100% perfect, and neither are tissue. Each has its advantages and disadvantages. Even with what I know today, I'd still choose mechanical if I had to do it over.
Actually, I'd rather have a 100% perfectly normal native valve.

 

[mmarshall]

Thank you all for all of the info and insight. I guess what my main concerns are the fact that I am 31 and being on warafin for that long (rest of my life) would seem to have other health concerns. I am young and single and do like to go out on the weekends and have a few beers...or 8 There are concerns of spiking my INR and monitoring it each week. My surgeon is suggesting the RP due to the fact I am young and active. But at the same time...I am sure that this is a surgery I do not want to do again...in 20 or 30 yrs. I know there are going to be pros/cons to both procedures and if I have to cancel out alcohol for my health...then that would be done. But if I have the oportunity to live the same life that I have now...then I am all about that. Im just concerned that if I get a mechanical...then I would worry about my heart and my INR...and other organs that will be affected by that...if at all. Where as with the RP....I will mainly just worry about my heart...and the homograft. I know it is my choice but man...talk about being more confused now than before...lol

 

[Karlynn]

you manage the medication around your life, not your life around the medication.

Well said Pam. I think it's kind of interesting that lately we've been seeing people going for a tissue valve at a young age because if they went mechanical they'd have to be on Coumadin the rest of their lives. When I got my mechanical at 32, they put that in so that I wouldn't have to have 2 -4 additional surgeries throughout my life and felt the lifetime of warfarin was a better trade-off.

For those choosing valves, it's hard to understand the concept of repeat surgeries and it's effect on the body, when they haven't had one surgery yet. Just remember that it's not an apendectomy or tonsilectomy.

 

[mmarshall]

thanks for the info...that's why I am here. Talking to my cardio he refered me to the surgeon. My cardio was saying that the logical decision...based on my age would be mechanical. After talking to the surgeon...he brought up the RP and was recommending that I go with the RP. I am going to have my cardio refer me to another surgeon to get a second opinion...which I planned on doing anyways. But going into it I thought my only decision was mechanical....now I have the confusion of the RP thrown in there..lol

 

[CCRN]

Research

Research

thanks for the info...that's why I am here. Talking to my cardio he refered me to the surgeon. My cardio was saying that the logical decision...based on my age would be mechanical. After talking to the surgeon...he brought up the RP and was recommending that I go with the RP. I am going to have my cardio refer me to another surgeon to get a second opinion...which I planned on doing anyways. But going into it I thought my only decision was mechanical....now I have the confusion of the RP thrown in there..lol

Hi

You have other options besides a mechanical valve and RP. Read this web site and ask your surgeon many questions until you are satisfied all options have been discussed. Valve choice can be a very difficult one to make if you are under 50 years old.....heck, it's hard at any age when you have options. There is some evidence that the Ross Procedure may not be a good choice for some persons with bicuspid disease. Check out the Bicuspid Foundation web site. I myself have chosen to rest comfortably with that Egyptian disease called "De Nile" until my next echo.

 

[Granbonny]

Hi

Hi

First of all. can we have a first name? Is it Mike, Mark ect... You say you are single, age 31...My son was single until 1 year ago.Before, he did love to have a few beers, ect. Toned down now a little. ......(at age 35)...If he were to have to make this decision(policeman)...He would have to choose a tissue... If he were not a policeman... I would push him to have a mech. valve...THEN..the only thing that I would tell him to do..Get a Pillbox...VERY important to have one..by your bed...whatever..suits you best..just to REMEMBER to take that 1 pill a day...It really does not matter if you take it at night or in the morning. Just has to be the SAME time frame...You can be off a few hours. O.K.....Then, if you have good Insurance. purchase a home testing Protime machine..Keeps you from having to go to a clinic, ect. for you INR.. Then, all you have to do is call it (INR) in to your Coumadin provider.(Can be your Cardio or PCP)Frees you up from having to be around for those appointments...Hope I have not confused you too much... Guess what it all boils down to... a pill a day or 2 more surgeries in your lifetime.Or, maybe 1 more..than get the Mech....Back to the blood work for INR..Yes, it will take you a few weeks, to get into the range...Safe..Then you will learn..If it's high,,, eat fewer green veggies..If it's low...Tweak your dosage a tad for a few days...(We will help you with that..when you make your decision..Mech or tissue..Bonnie

 

[ALCapshaw2]

MM -

If you are considering the Ross Procedure, then I highly recommend that you get your second surgical opinion from a surgeon who ACTUALLY PERFORMS the RP, and preferably does a LOT of them every year. MOST surgeons do NOT perform this procedure as this is a much more complex and time consuming procedure. Needless to say, a surgeon who does not perform the RP will more likely not have much good to say about it and DEFINITELY will not know much about it, even if he thinks it is a good idea.

'AL Capshaw'