Question About Leaving Valve Untouched

[cbdheartman]

John79t,

Thanks. My valve isn't showing any signs of calcification from what they tell me and it isn't stenotic. It simply has mild-to-moderate regurgitation/insufficiency. I wonder if that changes the equation at all.

 

[john79t]

Do they think they can repair is? Did they give a valve space for it? One of the echos I had rated my stenosis as moderate and when they did the cath it was very small. Look up some reasearch online for the regurge. There is still many heart surgeons that believe the constant regurge weakens the aorta which could lead to more aortic problems. Also connective tissue disorder often goes with the bi aortic valve. If you have a good sergeon it may be a moot point anyway. They should look at the tissue from your aotra and if it shows signs of CTD they will replace it and the valve. All you can do is let them know your preference and let them use their best judgement when they get in there. In any case the regurge needs to be addressed while they are in there either by repair or replavement.

 

[StephR]

I am a 35 yr old female that had an aneurysm measuring 5.1cm. In Feb, I opted to go the valve sparing route for my ascending and arch replacement. Overall,the valve was in good shape. The root was measuring normal and the BAV had only a slight leak. I want to have kids in the future so that weighted heavy into my decision to not have the valve replaced. Dr Craig Miller agreed with my decision and after the operation he said that my valve was in too good of shape to replace it at that time and there is now only a "trace" of a leak. He thinks I'll get 10-20 more years out of it. The week or two after my surgery I was having remorse on my decision because there was no way that I could go through another OHS again (I am a wimp when it comes to medical procedures)! However, now, after hitting the 4 month mark post surgery, I know I made the right decision for ME. The challenging recovery is far behind me and each week I seem to forget a little more about the experience and it no longer seems as bad as I thought it was. I have equated this to how I have heard people talk about childbirth. I am optimistic that I won't need a replacement for a couple of decades and by then they will have perfected the procedure via catheter and will have hopefully made significant advancements in tissue regeneration. If I was male, my decision may have been the same. It's a tough decision and with the thought process of an attorney, tougher. You need to make the right decision for you. You have access to excellent surgeons. I would add Dr. Craig Miller at Stanford to your list. He's an expert on valve sparring aneurysm replacements and was helpful through my decision making process. I cannot say enough great things about him and his team. I wish you the best!

 

[Guest]

This is what I had done. My doctor gave me 3 choices: 1 repair the aneurysm and spare the valve, or replace the entire ascending aorta and valve with either a #2 bovine or #3 mechanical valve. I chose #1, and I don't regret it. I should be good for the next 10 to 15 yrs with the dacron. Although I have some insufficiency, the BAV was functioning well. They replaced my ascending aorta entirely with dacron.

Lilly

 

[Guest]

Dr. Craig Miller was my surgeon as well. Great, great experience, and not one complication. The only thing that I suffered of the most was because of the scar. It's been 2.5 yrs since the surgery and I still can't go bra-less. The nerves in that area are damaged.

Lilly

 

[john79t]

I am going to have to wear a bra after my surgery? Bummer!

Sorry could not resist.

 

[glopps]

don't know if this will help or not. I'm 41 yrs old. diagnosed with BAV year ago. Valve working just great. no problems at all with it. but I have an ascending aneur at 4.4 and it's stayed steady for the last last year (probably with the help of a low dose beta blocker - .25mg). I know someone personally had valve replacment about 3 yrs ago with a bovine. I'm just waiting....for the surgery for aorta, but I will not do the valve. All surgeons recommend that nothing is wrong with it, why replace it. They (all 3 including one at Cleveland Clinic) have said that usually by the age of 40 you will see issues with it, and because I have none, they all recommend not replacing it. But if I do have to, I will go tissue. I am very active, run, bike, ski, etc, and the worst thing I have heard is the sound the mechanical valve makes and having to live with that. Not sure if I can handle that. I get the coumd thing though too. Was on that for a brief period for a clot post pregnancy. Hope that helps! (P.S. - I might be crazy but I think all my years of running have helped my valve stay in good shape)

- glopps
41 / female / 4.4 ascending aneur / BAV valve / waiting....in Minneapolis

 

[COLLEEN S]

Cameron is a pioneer in valve sparing. When you get your aneurysm repair, get the valve spared if it is able. He will ask if you want to sign a consent to valve if needed.

 

[Reddog]

Just had a Valve-Sparing Operation

Just had a Valve-Sparing Operation

Like several folks posting on this thread, I had Dr. Craig Miller at Stanford do my valve sparing aortic replacement. Fortunately everthing went well, but Dr. Miller is a world-class surgeon and they usually do. I have a couple of secondary medical issues that made me want to keep my own valve if at all possible (Crohn's, nosebleeds, etc... though I know there are plenty of people on Coumadin with those). In any case, I felt more confortable keeping my existing valve, and was pleased that Dr. Miller was able to do this.

I know that everyone (Ross included) would tell you to replace your aortic aneurism as soon as the risk of walking around is greater than the risk of surgery. Seems like you are there now (or will be very soon). I think the choice of keeping your valve is more akin to the choice of tissue vs. mechanical. It is highly personal, and only a choice you can make.

On a side note, I had surgery about a week ago and feel great. Obviously I'm not excited about the prospects of surgery again to replace the biscuspid aortic valve when it becomes stenotic, but I am far less afraid of this than before I had my first surgery. Pain has been minimal, but I have had to rely on my wife and relatives more than I had anticipated.

Red

 

[gustaf]

I am not sure where you got the 1/3 figure from, but I don't think that is valid for the ones with aneuyrisms, rather for BAV more generically (of which several do not know about it).

In any case, I had my valve spared and repaired (cut and stitched in some way). Have minimal leak for now but still much less training capacity than before the surgery. No one knows why.

I have a hunch that I would have done better with a mechanical valve, but I can't compare of course. Maybe the valve repair also had something to do with creating the AV block and the need for a pacemaker(?). I only had less then a minute to decide, so it was the total opposite to your process. Sort of "you might survive, and if so, do you care to keep your valve or have a mechanical?"

In any case, I would probably still prefer having the valve spared, given how the medical profession and related technologies develop. An OHS in 20 years might be done during a cruise in the Caribbean between the afternoon drink and dinner (if you have the right insurance...).

::g

 

[tobagotwo]

That 1 out of 3 information, along with other data and many other BAV links are posted here: http://www.valvereplacement.com/forums/showthread.php?t=11603&highlight=bicuspid+links . However, you aren't using all of the related information in your argument. You are picking out the pieces that you feel work for you and ignoring the rest. Data taken out of context is not valid for discussions.

- You have collateral BAV disease (the aneurysm)

- You already have mild-to-moderate regurgitation (your valve is already deteriorating)

The reason the aortic surgery is in front of you is that you did not slip quietly through the net, with no other BAV symptoms. You can squirm and try to explain away what is apparent to others, but you are not likely to be in that 66% group that doesn't have their bicuspid valve replaced. They do not develop the concurrent issues that you already have now, especially not at your young and tender age. They are discovered later in life, develop and seem to stay at mild regurgitation, or progress extremely slowly over many years (ask Epsteins).

And if you have ventricular hypertrophy, the running may be part of it, but the regurgitation absolutely factored into it, by making it even more difficult for your heart to provide the oxygenated blood needed to run. See what the assistant says to that notion.

It's certainly your decision whether to have it replaced, if the surgeon doesn't find it too badly incompetent when he gets there, but I find your arguments weaker and more dissolute as you go along, and I am unconvinced that the surgeon was really that one-sided in his thinking about your BAV. I think he may have expressed that as a possible scenario, and not the most likely one.

How you wish it replaced is also entirely your issue. If it were me, I wouldn't wish it to be hanging over me, an almost certain, extra OHS, no matter which way you choose to replace it when it happens.

Best wishes,

 

[cbdheartman]

- You have collateral BAV disease (the aneurysm)

- You already have mild-to-moderate regurgitation (your valve is already deteriorating)

The reason the aortic surgery is in front of you is that you did not slip quietly through the net, with no other BAV symptoms. You can squirm and try to explain away what is apparent to others, but you are not likely to be in that 66% group that doesn't have their bicuspid valve replaced. They do not develop the concurrent issues that you already have now, especially not at your young and tender age.

I think you raise a valid point and one I would really like to chew on. That is do the 1/3 2/3 numbers accurately predict the valve function going forward for someone with the aneurysm. At the same time, from what Dr. Cameron and others have explained it isn't clear to me that valve function and aneurysm go hand in hand. He said that the connective tissue issue is likely a gene that sits next to teh gene that causes the BAV. In other words, they are seen together because two sequential genes are imperfect.

As for the valve issue, I am not sure that my valve has degenerated in the least since I was discovered to have a bicuspid aortic valve at age 3. I've had a mild leak since birth. I'd be curious to look at the numbers on my echoes through time and perhaps will dig those up to see what they say, but I am not convinced.

Today I talked with a family friend who ihs a cardio-thoracic surgeon who really likes Duke Cameron. He said that he'd listen to what he is saying. If he is saying he'd recommend waiting on surgery, he'd wait. Of course this goes against my gut and everything folks here are saying (and the experience of bugchucker whose cardiologist changed course in a matter of a few hours for a 4.7 cm aneurysm), but I wish I wasn't getting so much conflicting advice.

I hadn't thought of the bloody nose issue with Coumadin. Also, does the fact that I have had IBS issues color my choice too?

So much to think about.

 

[tobagotwo]

If you have anything that causes bleeding anywhere in the digestive tract (or cranium, for that matter), that can be something to consider with warfarin. It's not that it can't be done, but it ups the ante a bit.

Understand, the 1/3-2/3 comes from those that are diagnosed with BAV. The concensus is that the vast bulk of BAVs are never discovered. The genes may indeed be different for BAV and aneurysm, but the aneurysm indicates connective tissue problems, and when they both appear, the two are often a matched set. That can mean myxomatous (weakened) tissue problems down the road.

As an example, an issue that we've sometimes seen with the Ross Procedure is when the original valve is bicuspid and incompetent, and is then replaced with the pulmonary valve, which appears okay. But then, in a few months or years, the pulmonary valve shows that it has tissue problems as well, which the less strenuous pulmonary function wasn't stressing, and winds up having to be replaced quickly. While there seems to be less of that in the last couple of years, the incidents you hear about do stick in your mind. It's not always easy for even the surgeon to tell if the tissue is compromised. Then again, maybe your surgeon has a technique or a lab that can determine that.

If your valve is not declining (your echoes have remained stable), I guess I can't blame you for wanting to keep it. It makes life so much easier, if only it keeps working.

I am not a doctor. Only a couple of folks on this site are, and I can only think of one whose field is cardiology (interventional, I believe), and he doesn't post often. There is certainly nothing wrong with trusting your surgeon. When you post with us, you get our biases, and what we see (or fancy we see) from the fragment of valve traffic that passes by us on this site. Like any other advice, you need to take it with a grain of salt. Your surgeon has all of your heart and health information and years of direct, expert experience. We have what's in your posts, what we've absorbed over time about the subject, and our observations. They are from a unique perspective, which is their only recommendation.

My gut on this is that you will wind up replacing the valve fairly short term. But I don't have a working crystal ball or a medical degree, so who knows? Maybe you will get 10 or 20 years out of it first. That would be worth it.

Be well,

 

[Maryka]

Hi, again, CBD! You really want to go without valve replacement, so do it. I think you are a brave young man with a strong faith in God. So, get the aneurysm fixed, sign the consent to do the valve replacement if your valve looks much worse when the surgeon gets in there, then turn it over to God. That is what I think.

I think Duke Cameron would go with the no-replacement unless something worse became apparent when he gets in there. Your CC surgeon probably would do that also.

I know I prayed before my surgery (I was totally without accompaniement of friends and family). I turned my fate over to God, just asking that I not have a wake-up during surgery (I had that once with a biopsy--yow!). When they put me out, I was out for over 24 hours, but was told my recovery was "excellent". Right after waking up they had me walk to the scale (which showed I had neither lost nor gained weight and I told them how disappointed I was) then they had me walk to my assigned recliner on wheels, which I did, and fairly soon was delivered to my room.

God came through for me and despite the big-time recovery (whoo baby!) it all was "good" once I got home.

You will DO IT, CBD, and, if necessary, you will do it again sometime in the future. Fret, not, CBD!