Confused

[SpoDeb]

17 years after being diagnosed with a BAV and being monitored with yearly echos, I was told 6 weeks ago by my cardio that "now is the time" due to increase in regurgitation and evidence of growth in my LV (5.4 cm to 6cm) (but still normal function of my LV and heart). (well, he actually didn't say it so nicely, but that's another story) Really crappy timing as I'm getting married in 3 months..but what can I do? He recommended I start meeting with surgeons

For 4 years my cardio was talking Ross Procedure, but the first surgeon I met with, Dr. Laks at UCLA said I'm not a candidate, and need to decide between mechanical and tissue, and need to have surgery within 6 months, preferably sooner and I need to limit workouts, alcohol consumption and stress

While not loving the idea of a 2nd surgery, I really don't want to be on coumadin, plus we'd like to have a child or children, so I settled on tissue valve in my mind.

Then I met with Dr. Trento 2 weeks later and he said I'm a great candidate for a Ross Procedure even though I have a BAV with regurgitation...I could wait up to a year for surgery, but probably better to get it over with now.
We decided we liked him and Cedars better than Laks and UCLA (even though I"m a Bruin) and decided to schedule first available surgery to get it over with so I can enjoy our wedding in November.

Am scheduled for Aug. 14 :eek
Am not feeling any symptons..which makes it all the tougher.

But now my cardio isn't sure whether I should have a RP or just get a tissue valve. He said he's heard there have been problems with BAV patients and RP (and I've found some studies on the internet showing this, especially with pure BAV with insufficiency) but on the other hand I'll only get a MAX of 10 years out of a tissue valve due to my age (37)

I've been reading posts and searching the Internet like crazy, but I can't seem to come to a conclusion

any advise?
Any research I can go to?
Thanks!
ie
Debb

 

[Ross]

Deb if your a Ross candidate, go with the Ross. It has the potential of lasting a lifetime where tissue does not. Yes it's true that BAV's sometimes have problems with Ross's, but I'd do anything to minimize your chances of crawling back up on that table. At this point, that would be it other then going mechanical. Other then this, take the tissue until your done having children, then if and when the time comes, go mechanical to finish life out with. It's possible to have children while on Coumadin, but it's very difficult and not recommended obviously. You'd need a specialist to deal with that pregnancy and life is complicated enough.

 

[Karlynn]

I would trust the opinion of the surgeon you chose and go from there. If you are feeling good about that doctor and not having much 2nd guessing on your choice of him, then go with it and don't look back. You are taking a very proactive stance and I applaud that.

As far as "feeling fine", you've been dealing with this issue for years. You may find after surgery and recovery that you were feeling symptoms prior to surgery, but that they just came on so gradually your body adjusted and tricked your mind into thinking all was well.

Best wishes!

 

[PJmomrunner]

I understand that the Ross Procedure is attractive for many reasons, but in my opinion minimizing your chances of a re-op, at least in the short-term, is not one of them. In fact you double your chances of everything that can possibly go wrong operatively and postoperatively when replacing two valves instead of one. That's where the gamble is with a Ross. If you add to that the possibility of tissue problems that can accompany a BAV, the risk is higher. All that said, the collective risks may still be far outweighed by the benefits for a given individual.

 

[teri]

Hi Deb! My husband, DJ, is in almost the same situation. DJ has a BAV and aneurysm at the root measuring 5.2 cm. He is 48 years old, in otherwise perfect health, and completley without symptoms. The first surgeon we talked with completely trashed the Ross, probably because they didn't have anyone in their office who could do the procedure well. The second surgeon told us DJ was "perfect" for the Ross. In my research, yes there have been some problems, but most have been due to the pulmonary root, which becomes the aortic root, dialating after the switch. To alleviate that, they now reinforce the root with Dacron. Also, the donor valve in the pulmonary position can become stenotic and "shrink" a bit, so the actually put in a valve that is a little larger than needed to allow for the shrinkage. Your key is finding someone who really knows what they are doing and trusting them to make the right decision once they get into the surgery. We have chosen the Ross, with a porcine (Medtronic Freestyle) valve as a backup. Our surgeon, Dr. John Brown at IU Med Center in Indianapolis, told us that once he sees my husband's pulmonary valve, if he wouldn't put it in his own aortic position, he won't put it in DJ's. We just feel like this is the right decision for us....with the greatest chance to not have to have another surgery anytime soon. DJ's surgery is now scheduled for August 28 at 7:30 am. Good luck to you, and my advice is to go with your gut feeling! Teri

 

[MikeHeim]

Debb-
Did Laks mention why you weren't a candidate for the Ross? There are several Laks alum on this list, but I don't recall any of them having a Ross. It's very possible that it is not his specialty. Trento also has an excellent reputation and there is absolutely no reason not to trust what he said.

 

[Mary]

Most of the current research on BAVs is coming out of Cedars, so I would lean towards their program and their surgeons.
Check out this site for more information.
http://www.bicuspidfoundation.com/

 

[Bryan B]

Hi Deb! My husband, DJ, is in almost the same situation. DJ has a BAV and aneurysm at the root measuring 5.2 cm. He is 48 years old, in otherwise perfect health, and completley without symptoms. The first surgeon we talked with completely trashed the Ross, probably because they didn't have anyone in their office who could do the procedure well. The second surgeon told us DJ was "perfect" for the Ross. In my research, yes there have been some problems, but most have been due to the pulmonary root, which becomes the aortic root, dialating after the switch. To alleviate that, they now reinforce the root with Dacron. Also, the donor valve in the pulmonary position can become stenotic and "shrink" a bit, so the actually put in a valve that is a little larger than needed to allow for the shrinkage. Your key is finding someone who really knows what they are doing and trusting them to make the right decision once they get into the surgery. We have chosen the Ross, with a porcine (Medtronic Freestyle) valve as a backup. Our surgeon, Dr. John Brown at IU Med Center in Indianapolis, told us that once he sees my husband's pulmonary valve, if he wouldn't put it in his own aortic position, he won't put it in DJ's. We just feel like this is the right decision for us....with the greatest chance to not have to have another surgery anytime soon. DJ's surgery is now scheduled for August 28 at 7:30 am. Good luck to you, and my advice is to go with your gut feeling! Teri

Hi Debb,

I have to agree with everything Teri said here. Yes...the RP is not for everyone with a BAV, but IMO it should not be automatically ruled out for all BAV patients. The points Teri brought up about improvements to the RP and precautions that are taken in BAV patients are right on...especially if you have a top notch surgeon. From everything I've read Dr. Trento is a top notch surgeon. Ultimately you will have to make the decision that you are most comfortable with. All of us that have had surgery or have had to make the decision for a family member have gone through what you are going through. Just try to make the best informed decision possible and try not to 2nd guess yourself after that. At your age a tissue valve will probably last 10-15 years max, and I would imagine that childbirth may accelerate that process. But if you don't get the RP I think a tissue valve may be the best alternative until you are done having children. It's a difficult decision for everyone to make, but in your case there are variables that make the decision even tougher...just remember that whatever you decide will be the right decision for you. None of us can see into the future, so all we can do is make the best informed decision possible and run with it.

 

[Superbob]

Deb,

I don't have expertise to offer, but wanted to express my best wishes to you in getting through this and then on with your wedding and the rest of your life. From everything I've read, if having a child is a high priority for you, then tissue is the best choice, if it comes down to tissue or mechanical. I did not have the option of a Ross, but if you and your surgeon decide that's the best option for you, I think there is a lot of wisdom in what Teri wrote about going into the surgery with a backup. She specifically mentioned the Metronics Freestyle (porcine.) I have that and am very happy with it. Of course the situation of all of us is different. I am in my 60's and so the tissue may be the only replacement valve I'll ever need. (None of us has a crystal ball, unfortunately.)

As others have said, do your research and your consulting with medical experts, then go with what seems to be best for you --- and then go forward with confidence and don't look back.

Keep us posted. We wish you all the best.

 

[Christian]

Another lawyer. We should consider starting a firm...

 

[SpoDeb]

Thanks

Thanks

Thanks everyone for your thoughts and wishes. It doesn't make my decision any easier, but it's at least nice to know that everyone here went though similar difficult decision making proceses.
I will be VERY happy when my decision is made.
My cardio suggested I meet with Trento again before my surgery, and his office actually squished me in for a 2nd meeting next Tuesday, so I will be able to ask him more questions about whether there is any increased risk having a Ross due to being a BAV regurgitator...if he says no, it's the same risk as everyone else then I think I will tell him to try to do it if my pulmonary valve and root look good after he "opens me up", with a backup of a tissue valve.

Thanks for the info about the Dacron on the root..I wasn't aware on this new technology!
It makes me feel a little more secure about he procedure depite being a regurgitator...I guess it all depends on the strength of my overall tissues..and regurgitators tends to have weaker tissues that stenosis patients.

I'm going to check in on Randy the fireman this afternoon....his surgery with Trento was yesterday and I'm going to the hospital to donate my 2nd unit of blood this afternoon. He may still be in ICU but I have his wife's cel to call.

Best

Debbie

 

[Ross]

Honestly, I think your decisions thus far are the correct ones. If marriage and a life of children weren't in the picture, I'd say differently, but I can certainly understand this part of your life.

 

[OldManEmu]

It's time

It's time

Debb at 6cm your LV has moved beyond the normal range and surgery is now recommended. If child bearing is being considered your only real options are a Ross or a tissue valve as has already been stated pregnancy on warfarin is high risk for the child.

 

[geebee]

Welcome Debb.
I used to live in Santa Monica and my cardio was at Cedars. Great hospital and would be mine of choice in the area for surgery. You will be in the best hands.
I agree that either a Ross or tissue is the choice for you given the wish for children. My understanding is that getting a Ross depends on what is found once the surgeon is inside. You may end up with a tissue valve if things cannot be fixed with a Ross.
Your recovery will be well along by the date of your wedding. Don't overdo things after surgery trying to get ready though. Allow yourself some down time. I wish you well.

 

[susieq14]

Debbie,

Have no experience in your situation so I can't offer any words of wisdom but did want to offer lots of prayers, positive thoughts and a BIG HUG to you as you deal with your very important decision.

Best Wishes!
Susie

 

[tobagotwo]

Most of the Ross failures in BAVs that I've run across in this forum and other readings are centered on one of two issues:

Expansion of the aortic root after surgery. This eventually torques the new valve so it can't close properly, and you're back to regurgitation/insufficiency.

Myxomatous tissue breakdown occurs in the pulmonary valve used for the aortic replacement. The pulmonary valve looks viable, but the tissue turns out to be weak.

There are a good number of postings about crises with the replacement in the pulmonary position, but most of them work out over time without surgery.

However...

The root can be stabilized during surgery. The ascending aorta should be considered for stabilization or replacement as well, if appropriate.

The surgeon can have the tissue by the pulmonary valve checked for myxomatous (fibrous or gelatinous) indications, and decide whether or not to transplant the pulmonary valve. It's not a guarantee, but it's a good indication.

Both these take time - pump time - but they're options. If the surgeon is doing a lot of Ross Procedures, he probably has more thoughts about these things.

I would ask him what extra checks or things he might do on a BAV patient undergoing a Ross Procedure.

If you do go with tissue, and it's a "simple" aortic valve replacement, I would consider the bovine CE Perimount Magna at your age. It's an anticalcification treated, supraannularly-placed valve that comes from a line of valves with a track record for longevity and low gradients. The stentless Medtronic Freestyle or their Mosaic would be close runners-up, in my book.

Best wishes,

 

[Arlyss]

Ross and BAV

Ross and BAV

Hi Debb,

There are several controversial areas surrounding those with BAVs, and the use of the Ross procedure in adult BAVs is one of the most contentious.

I am troubled that you do not mention your ascending aorta at all. Your physicians should all discuss that with you . You will want to know the size of your ascending aorta - just like you know other important statistics about yourself. Your aorta can put your life at risk suddenly, so you need to know about it now, and it needs to be properly checked always - even if you are told it is "normal" now.

It may be that your cardiologist is just learning about BAV and the aorta. The ACC/AHA 2006 guidelines now mention this association, so more cardiologists should become aware. You might consider asking him if he has seen Dr. Alan Braverman's article on BAV. Here is the link to the abstract
http://www.ncbi.nlm.nih.gov/entrez/..._uids=16129122&query_hl=1&itool=pubmed_docsum

Here is a quote from the above paper regarding the Ross, "Kouchoukos and colleagues recently reported a large series of 119 patients undergoing the Ross procedure for aortic valve disease with reoperation rates of 25% on the autograft and 14% on the pulmonary allograft at 10 years." It mentions the papers published suggesting that the pulmonary artery has the same tissue abnormality as the aorta and concludes, "Therefore the Ross procedure should be used cautiously, if at all, in most patients with BAVs, especially when aneurysmal dilation of the root and ascending aorta is present."

You will want to know numbers of patients, short and long term results, and if the technique you will have is the same as used to achieve those results.

It is important to ask specific questions about technique, outcome in the short and long term (10 years as above, which is really not very long!) and follow up for any procedure, but especially those with BAV considering a Ross.

With the Ross, one is donating a valve to themself. I understand that even when "normal" the pulmonary valve/root are thinner and less rugged than the aortic ones - nature designed it to fill a place with less pressure. In light of the successful track record of the bovine pericardial valves today, it needs to be carefully weighed. It is possible one might give up their pulmonary valve, only to later end up with a bovine valve in the aortic position anyway.....

But whatever the choice, please always know the status of the aorta.

Best wishes,
Arlyss

 

[Mary]

Arlyss,
Debb says that it was Trento at Cedars pushing for the Ross. Is he not involved with the BAV research being conducted there?
It's hard to know who to trust, so I'm looking forward to your answer.
Thanks,
Mary

 

[Arlyss]

Ross Paper from U of Indiana

Ross Paper from U of Indiana

For Teri, and anyone else who might be interested in the work of this group,
here is a paper published by the cardiothoracic group at the U of Indiana regarding their results with the Ross procedure.

http://www.ncbi.nlm.nih.gov/entrez/...pt=AbstractPlus&list_uids=16607909&query_hl=6
Best wishes,
Arlyss

 

[davidfortune]

To Ross or Not To Ross?

To Ross or Not To Ross?

Debb,

Ross is a theoretically good choice in certain circumstances - one of the most important factors is the skill of your surgeon and the number of Ross's he has performed. Even Dr. Tirone David mentions that his first 10 Ross patients suffered for his inexperience. I would not consider a Ross with a surgeon who does not have an outstanding track record and at least 100 Ross surgeries under his belt. No offense but I want his learning curve to be a flat line before he gets to me.

Whether a Ross will avoid a reoperation is a guess. We do not have enough long term history from skilled surgeons performing Rosses on young patients (i.e. 30 - 50) to have reliable statistical predictions of Ross valve lifepsans.

There is some evidence that the grafted pulmonary valve will not fair as well in many patients especially women and especially if the grafted valve came from a female donor. There is apparently a higher likelihood of stenosis of the pulmonary valve in female patients than male patients and an increased likelihood if the valve came from a female donor.

I'm wrestling with the same decision.

Newest ultra-pure Pyrolytic Carbon mechanical (On-X) which may hold the opportunity for reduced anticoagulants or newest tissue valve with anti-calcification treatment which theoretically may last longer than previous tissue valves or the Ross which theorectically may last longer (or not) than tissue valves and PROBABLY won't require anticoagulation but may require a pulmonary reop?

It is not a easy decision. I waiver regularly. Ultimately you have to gamble (for a gamble it is since all the statistics in the world cannot be accurately applied to an individual) based on the knowledge you have gained and the preference and skill of your surgeon.

Then once you have made that choice (particularly if it is a Ross) you need to have a backup plan in case the surgeon determines upon direct inspection at the time of surgery that the Ross is not a good option and he needs to do something different. You want to have that decision made ahead of time.

Good Luck. Let us know what you decide.