mechanical aortic valve or ross procedure?

[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]

Chilihead

Chilihead

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. ....I am a little confused about your statement that your doctor told you..you would have to have another valve replacement in 30 years. 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.. And, yes, I do plan on living that long Daddy is age 90 and I can hardly keep up with him. 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.

'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