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]

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 (http://www.columbia.edu/~bkk5/PSTalk12-04RossProcedure.swf)

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. :D

[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 :confused:

[CCRN]

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 :confused:

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]

First of all. can we have a first name? :D Is it Mike, Mark ect... :D 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. :p ......(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'

[tobagotwo]

I agree with Al. Don't get your second opinion from a surgeon who doesn't do Ross Procedures.

You may or may not be suited for one, but there is definitely a gap between those who do and those who don't.

At your tender age, it is likely you'll have at least one more OHS, no matter what way you go.

If you show signs of tissue problems, the mechanical might be the best choice, as it will withstand an enlarging aortic root without losing its integrity, which even a native valve cannot do. Cindy's son appears to have gotten into this pickle with his Ross.

If you are having enlargement of your aorta along with the valve issues, you will likely be up for another surgery anyway, if it's not ready to be fixed when you have your AVR. Not to make you miserable, but you will want to be aware of the issues that can go along with BAV.

Here's a link that discusses BAV: http://www.valvereplacement.com/forums/showthread.php?p=107369&highlight=syndrome#post107369

If your tissue doesn't show any myxomatous signs, the Ross is as close to what nature gave you as is possible with today's medicine. If you needed a pulmonary replacement in twenty years, it is highly likely you could get one via catheter.

Best wishes,

[PapaHappyStar]

A mechanical does not lose its integrity in the same way as an autograft but if you dont undergo root replacement and have root dilation post-op a mechanical will leak along the edges ( paravalvular ) and might even detach. There are ways to handle the possiblity of aneurysm due to connective tissue problems in a Ross ( hemashield jackets around the root etc. ). If you have root enlargement and your primary lesion is regurgitation then I would question the surgeon closely about his technique and ask him what the appropriate solution would be.

Most Ross surgeons are good at spotting connective tissue problems when they take a look but unfortunately even good ones miss a few...

[tobagotwo]

Often there is no indication whether expansion will occur in the future, so preventative measures are not always taken.

However, you're right to point out that I wasn't taking root-stabilizing techniques into account, and that's a missed opportunity. Preventative stabilization raises the possibilities in a positive way for the RP (actually, for any valve). Thank you for setting it straight.

I theorized that you could get more mileage out of a mechanical when those circumstances do occur, depending on severity. It won't deform as a natural valve would, and thus should function effectively for much longer. I believe that's an accurate portrayal, the possibility of eventual paravalvular regurgitation notwithstanding.

Of course, a mechanical would require replacement sooner or later as well. In fact, if the root expands too much, or the aorta is involved in the expansion, surgery would be required even if the valve were still functioning adequately.

Best wishes,

[mmarshall]

Well...I am going to get a second opinion from another surgeon next Wed....and the surgeon is outside of the network of my heart doctor. I hope he does not take this personally but hey...the more info and opinions from others...the better :) I guess the options weighing in on my mind are this....mech. valve....life time of coumadin (and it's not the fact of taking a pill everday...I'm respsonbible enough for that)....it's the other health concerns that go with it. I may not even be able to have the RP done and will therefore go with the obvious choice of mechanical. If that is the case...then I would want to go with the On-X...at least there is the hope of maybe dealing with asprin each day and not worrying about my INR all of the time. With the RP...worried about another OHS down the road...so I guess my question is this (and I will ask the surgeon as well)...down the road the pulmonary valve will need to be replaced...can this be done through the cath. procedure. I know people say that advancements are being made and it is possible. But I was also told as a teenager that I would not need surgery until my mid to late 40s and by then technology would be advanced to where we would fix it with lazers. Well, I'm 31 and we are nowhere near lazer technology...lol Oh yea...side note to those that have been helping me think this through....the surgeon I talked to last Monday stated....my two logical options are RP and mech. He advised me to go with RP. Once he gets in there and I can not get the RP...then he would do mech. From his information...he was informing me that there is a 1% anual risk with coumadin and in 20 to 30 yrs...logically that would be up to 20 to 30% risk. Where the RP has a 20 to 30% chance of valve repair in the same time period. So my thinking is that if I could live the same life style as now why not try the RP. As you can see I am rambeling and going back and forth...lol And yes, I know that neither operation is a guarantee that I will not have to have Re-Ops or coumadin.

[mmarshall]

Wow...sorry to hear that. My parents have been really supportive in everything. I have not gone into details with my mom....she worries enough as it is...lol My dad is like a best friend to me so we have talked about it in length. We kinda think alike so it is good to have that backup brain/opinion...lol When I first heard about the RP I thought that sounded great and he agreed. His concerns were the same as mine....another OHS down the road. Especially if it has a high chance of not having to change my lifestyle. And the thing that I go back and forth on and am trying not to rely on is the fact that who knows...in 30 yrs from now...what can and can not be done and the advancements...I thought that they still cut down the middle of the chest of about 12 inches or so....they have reduced it to 4 to 6 inches...well, the surgeon I talked to stated that. But I do have a big group of friends that have been there for me and I have a small family that have been there too....with my age and health...everyone I have talked to...heart doc and surgeon included....think that I will make a quick recovery. I'm just the type of person that hates needles so I know this will not be fun....lol

You sound like you're getting all of the information you can, and that is the best thing you can do. I noticed that, during your teenage years, they told you in your mid to late 40's - Mike was told the same thing and that with all the advances in medicine happening, it would be no big deal. He lived with that thought all of his life, until last year. We've learned not to trust what one doctor says with something like this, but get as much information as you can and if that means hurting your doctor's feelings by getting a second opinion, so be it.

I'm curious about one thing - how are your parents dealing with the surgery being sooner than what you were told as a teenager? Mike's mom was in denial when it happened to Mike last year, and he's 38. She kept saying, "no, no, no, the angiogram is wrong. Dr. SoandSo said in your fifties." She was of the mindset that what they were told years ago couldn't be wrong, until she saw his angio photos the day of his OHS. I don't often get one up on my mother in law (sharp, retired HS English teacher) but when I do, yipppeeee! A little levity on the day of your surgery can go a long way!

[chilihead]

I had my Ross done by Dr. William Ryan at Presbyterian in Dallas back in November of 2003. If possible talk to him before you make your decision. He has done over 150 Ross procedures and he did two of my coworkers as well in the past year. I was 40 when I had it done and he said I'd have another surgery in my lifetime if I lived to be 70 or 80 regardless of my valve choice. No other doctor told me that but most of them are putting valves in people that are over 60. I don't look forward to another surgery anytime soon but I feel great and drink, snow ski, ride bikes, etc. with no worries. To me it was about the quality of life after teh procedure that mattered the most.
Best of luck and get as many opinions as possible. Just be aware that only a surgeon or cardio who has someone in their group doing Ross procedures will generally even make it an option.

[Granbonny]

It is good to see your post. Glad that you are doing well. Lance Armstrong will pass by my house this weekend. I remember, how you first posted, about loving to ride your bike :) And loving to cook Chilli. :D ....I am a little confused about your statement that your doctor told you..you would have to have another valve replacement in 30 years. :confused: Do the Ross's last that long?And that you would have to have another replacement in 30 years, regardless of your choice of valve? I have the Mech and would hate to think, I would have to have VR. replacement at age 92.. :eek: And, yes, I do plan on living that long :D Daddy is age 90 and I can hardly keep up with him. :p Good to see you posting..Bonnie

[mmarshall]

I had my Ross done by Dr. William Ryan at Presbyterian in Dallas back in November of 2003. If possible talk to him before you make your decision. He has done over 150 Ross procedures and he did two of my coworkers as well in the past year. I was 40 when I had it done and he said I'd have another surgery in my lifetime if I lived to be 70 or 80 regardless of my valve choice. No other doctor told me that but most of them are putting valves in people that are over 60. I don't look forward to another surgery anytime soon but I feel great and drink, snow ski, ride bikes, etc. with no worries. To me it was about the quality of life after teh procedure that mattered the most.
Best of luck and get as many opinions as possible. Just be aware that only a surgeon or cardio who has someone in their group doing Ross procedures will generally even make it an option.

Thanks Chili...lol I talked to a surgeon at Medical City of Dallas...Dr. Todd Dewey. He is the one that gave me the info and advised on RP. I have an appt. with Dr. Robert Hebeler at Big Baylor...downtown Dallas. Just curious...is your cardio doc. associated with the North Texas Heart Center? My heart doctor is great and have found them to be a great group. I have a friend that works at Presby of Dallas and she put me in contact with a referal group at Baylor that referred me Dr. Hebeler...I wanted to go outside of the network to get a complete non-bias opinion.

[surfsparky]

All the best with your decision. It's tough because each option has it's drawbacks and there's no perfect choice. Keep searching and venting your thoughts, everyone is here for you.

[surfsparky]

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

Cindy,
sorry to hear that Teddy is needing surgery so soon, we'll be thinking of you,
Chris and Yolanda

[tobagotwo]

If I understand it correctly, part of what's going on with Ted is tissue problems, and these appear to have contributed heavily to the decline of his Ross solution. He would be having surgery again for his ascending aorta regardless of the valve choice made for his earlier operation. Unfortunately, he will need both valves replaced again in this surgery.

My hat's off to his mom, and what she's been through with this.

Best wishes,

[chilihead]

Getting another opinion out of network is a good idea. I currently see Dr. Steven L. Meyer at the North Texas Heart Center on Walnut Lane in Dallas. It's right next to Presbyterian Hospital. I'll see him on Friday for my latest echo results and a checkup. A Ross is only a good option for you if you have an experienced surgeon to do it. My thoughts before I had mine was that I wanted a guy with at least 150 under his belt. There is another Dr. near Austin named Chip Oswalt that has done well over 300 of them. A lady named Susan on VR.com had her Ross done there but I have lost touch with her. I'd be curious to know who is doing the Ross procedures at Baylor. I originally wanted to go there but had an HMO inusrance problem taht sent me to Presby. Not at all disappointed with Dr. Ryan however.

Best of Luck. We all know what an agonizing process the valve selection is.

[mmarshall]

Getting another opinion out of network is a good idea. I currently see Dr. Steven L. Meyer at the North Texas Heart Center on Walnut Lane in Dallas. It's right next to Presbyterian Hospital. I'll see him on Friday for my latest echo results and a checkup. A Ross is only a good option for you if you have an experienced surgeon to do it. My thoughts before I had mine was that I wanted a guy with at least 150 under his belt. There is another Dr. near Austin named Chip Oswalt that has done well over 300 of them. A lady named Susan on VR.com had her Ross done there but I have lost touch with her. I'd be curious to know who is doing the Ross procedures at Baylor. I originally wanted to go there but had an HMO inusrance problem taht sent me to Presby. Not at all disappointed with Dr. Ryan however.

Best of Luck. We all know what an agonizing process the valve selection is.

I am going to schedule an appt. with Dr. William Ryan. After reading about your experience and one of the techs at my cardio's office advised me to talk to him as well. I go to the North Texas Heart Center at Medical City of Dallas but they basically share doctors and surgeons with Presby....they go back and forth between the two hopsitals. I am going to see the surgeon at Baylor this Wed. Dr. Robert Hebeler. He was the first surgeon in North Texas to use the robotic procedure and also does the Ross procedure. He appears to be on the cutting edge of the latest techniques and what not so that's why I'm interested in seeing him. I will let you guys know about him after the appt. I've already met with Dr. Dewey at Medical City of Dallas...then I will meet with Dr. Hebeler at Baylor and Dr. Ryan at Presby. Then I am going to pick A, B, or C :)

[tobagotwo]

Sounds like you've got some top-notch medical opinions on the way. If it's possible for you, the Ross Procedure is the closest thing available to what your heart started with. I didn't pursue it because of my age, but certainly would have in my 20's, 30's, or 40's.

As there have already been aortic replacements via catheter, the pulmonary, which is a lower-pressure site than the aortic would seem a natural. The current catheter replacement valves are not up to what OHS-installed valves can do, but they will improve. And in fact, they don't need to be as good to handle the pulmonary position. Top current valve manufacturers and a couple of new companies are in FDA trials, vying to get catheter-placed products on the market right now, so you know there is considerable pressure on their technical staffs to create approvable solutions. And if there is an aortic solution, it will furnish a pulmonary solution.

Best wishes,

[mmarshall]

Well...little update here...talked to another surgeon at Baylor last Wed. and from what he stated...I will more than likely be looking at a mechanical valve along with a stint...or whatever the term is...due to me being born with a "unique"..lol...heart. The reason why he does not see the RP happening is because I was born with a gift....two murmurs. My aortic valve is bicuspid and the stint..or whatever the correct term is....has a leak too. And due to the size of my enlarged heart...a mechanical valve maybe the best thing to do. I am still going to go see Dr. Ryan and Presby. of Dallas to get his opinion...which I think he is the RP master in Dallas...so I've heard...lol So I want his opinion on the RP surgery. So I know my priorities will change with time and things could be a lot worse...but...lol...being single, athletic, a weekend alcoholic, and still feel that I am invinceable....this whole being on blood thinning medication for the rest of my life has kinda got me down. I know I will get over it and things will get better...but being told that I have to stop lifting weights....and not eat and drink whenever, whatever, and however on the weekends....maaan...talk about busting someone's bubble...lol Oh yea...the big kicker...I have a serious phobia about needles...can't even see someone get a shot on tv....I guess this is going to be a way to get over that huh...lol

[ALCapshaw2]

MMarshall wrote: "Oh yea...the big kicker...I have a serious phobia about needles...can't even see someone get a shot on tv....I guess this is going to be a way to get over that huh...lol"

As a child, I received a 'booster' shot in the thigh. I tightened my leg just before the injection and could barely walk for a week.

Ever since that episode, I learned to close my eyes, turn my head, and RELAX the 'target area'.

Clinch your teeth, tighten the REST of your body, but make sure the target zone is LIMP and you will do much better.

If a nurse or technicial is having a hard time getting an IV started, I just tell them to 'use the veins in my hands'. Since they are so prominent, no one ever misses those! Being a Heart Patient will change a LOT of your previous conceptions about Hospitals and Medical Procedures. :D

'AL Capshaw'

[Paul_N]

I had a RP on 10/03. Made the decision based off my age and the things I wanted to continue doing. I'm a klutz and bump and cut myself all the time without realizing it. Was 40 when I had it done. Still fighting fires, chase the dog in the yard, race my kids, etc. You're comments about your weekend drinking kind of surprised me. Are any of your doc's in the loop on that?

Found out about my bicuspid aortic when I was 16. Went through high school like most everyone else ... partying on the weekends with friends, etc. Continued seeing the cardio after we found the valve thing, every year with no restrictions. In 1986 through 1988, drinking was out of control. Got sober on 9/12/88. Checked in at treatment weighing 147 pounds ... not big deal until you find out I'm 6'-5". During the "lost" years, blew off all my visits to the cardio. When I got clean and started making the right choices, went back for a check up and to let him know what was going on. All the boozing enlarged the heart. He freaked out. From that point on, started going in every 6 months up until surgery. He told me that someday I would have to have surgery, I just helped speed up the process with all the drinking I had done. Still today when I go in for a check up, his first question is "are you drinking?"

Again, I'm not saying anything about you, but the weekend alcoholic comment caught my eye. If you haven't, discuss your drinking habits with your doc's. It's not just a liver thing ... it affects the heart too.

Good luck,

Paul

[mmarshall]

My cardio and surgeon are both aware of my lifestyle and drinking habits and neither has said anything about that. Usually I go out with friends on a Fri. and/or Sat. and just drink beer...of course depending on the night/morning...it could be 6 beers or 12...lol I was born with a bicuspid aortic valve and my aorta was enlarged at birth as well....or some kind of defect....forgot exactly but have it written down. My weightlifting 3 to 4 times a week is probably what speed my surgery up...they always thought I would be well into my mid to late 40s when surgery came around. I talked to the last surgeon last Monday and I am going to go with him. Dr. Ryan at Presby. of Dallas. We are going in with the intention to do the Ross and as a backup plan...he is suggesting the latest stentless valve. I will have another echo this Thurs. and if my heart has gotten worse in the last month...we will schedule surgery before the end of this month....if it is stable or even gotten better now that I am on lisinopril...we will schedule the surgery around the second week of June. The stentless valve made me a little nervous due to the fact of it giving out but according to the studies...this valve has been used for the last 12 years and has a 98% success rate with no calcification/wearing out yet. Of course there are no guarntees that any of the choices I make will be a one time OHS...but from talking to Dr. Ryan...at my age...and heart...I would more than likely be looking at another surgery in my lifetime no matter what. True the mechanical valves last a life time...but it may not last a life time in my heart. I know it is a risk to have my back up as a stentless...with the guarantee of another surgery...but if I get 15 to 25 years out of it and having a better chance of having a normal lifestyle for those years.....it is pretty likely that the advancements will be in place for a better mechanical or stentless valve and may not be the painfull OHS that it is today. Like I said...I know it's a risk...but at the age of 31...it would be nice to have that option in 20 years. Plus...if another operation is coming in my life time...I would rather have to go through it again at the age of 45-55....than have a mechancial replaced at the age of 60-65. Now I'm sure I have just stirred some debates up with this post...lol

[Paul_N]

Glad to hear everything is on the table with the doc's. But more importantly, you have a great plan. The plan you have sounds very similar to what we had setup, which was to go with a Ross up front then a mechanical as the backup. I wish you the best as June approaches.

Take the time now to make the bonds with family and friends even stronger. They all played a huge part in my recovery.

I'm with you on the "if" part of all this ... hopefully "if" or "when" that time comes again for me, the advancements made since my first surgery will be great and the choices available will be more appealing.

Paul

[Randy & Robyn]

We are going in with the intention to do the Ross and as a backup plan...he is suggesting the latest stentless valve.....Now I'm sure I have just stirred some debates up with this post...lol

Marshall,

I would say you have made a viable and informed decision, albeit perhaps a bit ambitious on the projected lifetime of a tissue valve at your age. I am 36 and will be going in for surgery this summer for a valve repair with a tissue valve as my backup as well. My surgeon said not to expect over 8-10 years. But with the latest anti-calcification treatments, who knows? They could go for twenty. No one can predict that. I'll be expecting ten but hoping for twenty plus.

Good luck to you. You'll be on the mend while I am still counting the days.

Randy

[crzylolo27]

My cardio and surgeon are both aware of my lifestyle and drinking habits and neither has said anything about that. Usually I go out with friends on a Fri. and/or Sat. and just drink beer...of course depending on the night/morning...it could be 6 beers or 12...lol I was born with a bicuspid aortic valve and my aorta was enlarged at birth as well....or some kind of defect....forgot exactly but have it written down. My weightlifting 3 to 4 times a week is probably what speed my surgery up...they always thought I would be well into my mid to late 40s when surgery came around. I talked to the last surgeon last Monday and I am going to go with him. Dr. Ryan at Presby. of Dallas. We are going in with the intention to do the Ross and as a backup plan...he is suggesting the latest stentless valve. I will have another echo this Thurs. and if my heart has gotten worse in the last month...we will schedule surgery before the end of this month....if it is stable or even gotten better now that I am on lisinopril...we will schedule the surgery around the second week of June. The stentless valve made me a little nervous due to the fact of it giving out but according to the studies...this valve has been used for the last 12 years and has a 98% success rate with no calcification/wearing out yet. Of course there are no guarntees that any of the choices I make will be a one time OHS...but from talking to Dr. Ryan...at my age...and heart...I would more than likely be looking at another surgery in my lifetime no matter what. True the mechanical valves last a life time...but it may not last a life time in my heart. I know it is a risk to have my back up as a stentless...with the guarantee of another surgery...but if I get 15 to 25 years out of it and having a better chance of having a normal lifestyle for those years.....it is pretty likely that the advancements will be in place for a better mechanical or stentless valve and may not be the painfull OHS that it is today. Like I said...I know it's a risk...but at the age of 31...it would be nice to have that option in 20 years. Plus...if another operation is coming in my life time...I would rather have to go through it again at the age of 45-55....than have a mechancial replaced at the age of 60-65. Now I'm sure I have just stirred some debates up with this post...lol

In response to This post . I am basically in the exact same boat you are. i will be 31 in August and have spoke with my surgeon for possible surgery in September and I am the same. I go out on fri or sat. and have drinks with friends which really isn't a problem because i can go with out alcohol. although i dont see the RP procedure an option because of the complexity of the surgery. I feel that the Mechanical valve wont always work although still concidering the ON-X valve but i feel that the tissue valve might be the best choice. I had surgery for ASD repair in 1981 and never had heart issues until this past year. Im still in limbo with my choice but a doctor friend of mine made a good suggestion. "Is to possibly get the tissue valve which might last 10 yrs. In that time a much more advanced valve might have been introduced where you dont need blood thinners". I was just adding my 2 cents since i am in the same boat minus the RP option. My dr never brought it up. So anyways since you will be in surgery before me. i would love to hear from you afterward

Thanx
Carlos

[rottrod]

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

I'm in a similar situation except that I'm 47. I will be following your story closely and listening to what you hear from others. Please let us know what your second/third opinions are.
The folks here seem to be really well informed and thanks to them I'm a lot less aprehensive about the inevitable.

I'll be thinking of you and praying about your decision and of course, outcome.

[mmarshall]

I'm in a similar situation except that I'm 47. I will be following your story closely and listening to what you hear from others. Please let us know what your second/third opinions are.
The folks here seem to be really well informed and thanks to them I'm a lot less aprehensive about the inevitable.

I'll be thinking of you and praying about your decision and of course, outcome.

I actually had my surgery about 2 months ago. I talked to 3 different surgeons and the plan was to do the ross procedure with the medtronics stentless tissue valve as a backup....the surgeon i went with was the one i was most comfortable with and explained everything to me the best. he recommended that we do the ross and if it can't be done then he wanted to use the "latest and greatest" tissue valve. so yea...i ended up with a tissue valve. it will actually be 9 weeks post op this tuesday...i feel great and am so glad i got this done...definitely the worst part of surgery for me was the stress and worrying done before it was done. let me know if you have any questions or need any help with this fun process we have/will go through...lol

[MarkU]

I'm in a similar situation except that I'm 47. I will be following your story closely and listening to what you hear from others. Please let us know what your second/third opinions are.
The folks here seem to be really well informed and thanks to them I'm a lot less aprehensive about the inevitable.

I'll be thinking of you and praying about your decision and of course, outcome.

I had my AVR at 47. They gave me a choice between mechancial or tissue. I didn't know anything about the Ross procedure until I found this site a few months afterwards, not that it would have affected my choice for a mechanical. I chose a mechanical weighing with a lower (hopefully) probability of additional surgeries versus the "inconvenience" of Coumadin.
Mark

[mmarshall]

I had my AVR at 47. They gave me a choice between mechancial or tissue. I didn't know anything about the Ross procedure until I found this site a few months afterwards, not that it would have affected my choice for a mechanical. I chose a mechanical weighing with a lower (hopefully) probability of additional surgeries versus the "inconvenience" of Coumadin.
Mark

that was my line of thinking for my back up to the ross procedure....i didn't want to deal with coumadin but if it meant that i did not have to have surgery again...i was ready to just deal with coumadin if it happened. once i found out that my odds of needing another surgery within my lifetime no matter what choice i made were pretty high...i went tissue thinking that i would rather live my current lifestyle for the next 10,15,20 or how ever long this valve lasts. but that is just me...deciding on a valve really depends on your situation. if i was in my late 40s or early 50s....i think i would have leaned more to a mechanical as my backup. but also talk to the surgeons and what they recommend....my surgeon actually said he could do the mechanical if i wanted to as a backup but he recommended the type of tissue valve i have now.