Question About Leaving Valve Untouched

[cbdheartman]

Have any of you ever heard about just repairing the aneurysm and leaving the BAV untouched? This was something Cameron mentioned as a possibility yesterday and I found it intriguing. I hadn't realized that only 1/3 of those with BAV end up needing valve replacements. If I have mild to moderate aortic insufficiency and regurgitation, then I think this is an option I'd like to consider.

Has anyone here done this? Does anyone know of any studies on this?

Thanks again!

 

[Ross]

The problem with BAV is that over time, it's going to get worse and almost always, the aorta walks hand in hand in the process. It would be great to keep your native valve for as long as possible, but in your situation, not sure that's the brightest thing to do. What I'm saying is, while your valve may not be to the point of needing replacing at this point, your aorta is, so why not do this just once and get it over with rather then set yourself up for further hardships down the road. Your young, you have a great profession to be in and I'd hate to see you retiring from it prematurely because of so many surgeries taking a vast toll on your overall health.

Tobagotwo may have some studies to refer you to, I'm not sure.

I'm going to refrain from answering any more of your posts because all I'm going to do is keep repeating myself and that's not getting anywhere nor helping any.

 

[cbdheartman]

Thanks Ross. I hear what you are saying. But it seems from my lay perspective -- and I admit that you are better versed in all of this -- that if my native valve is functioning well, which it is, and that 2/3rds of native bicuspid aortic valves never need to be replaced, then perhaps it would be worth taking my chances to see if the native valve can take me the distance. Yes it might not. And that is certainly a risk, but none of these options is ideal! From what Dr. Cameron said, it seems like the connective tissue issue in the aorta might be a related gene that is right next to the gene that causes the bad valve. That is, that they might often occur together, but that the tissue of the aorta is weak doesn't necessarily make my BAV worse than the "average" BAV -- if there is such a thing. I'd welcome someone showing me that I have that wrong.

 

[cbdheartman]

I might add that he and his assistant did not believe my enlarged ventricle was related to the BAV. They believed it related to the fact that I am a runner (or was a sort of runner before the last two months!).

 

[sue943]

When my mitral valve was at a critical stage my aortic valve was only assessed as being 3/5 so strictly speaking the replacement wasn't urgent however my surgeon decided to operate the once and do them both at the same time to avoid a second OHS if possible. That was fine with me.

 

[DavesMom]

When my mitral valve was at a critical stage my aortic valve was only assessed as being 3/5 so strictly speaking the replacement wasn't urgent however my surgeon decided to operate the once and do them both at the same time to avoid a second OHS if possible. That was fine with me.

My situation was somewhat similar except it was the aneurysm that wasn't at the point where it needed repair. My aortic valve, however, was urgent so the surgeon said he'd do them both at the same time.

 

[catwoman]

Thanks Ross. I hear what you are saying. But it seems from my lay perspective -- and I admit that you are better versed in all of this -- that if my native valve is functioning well, which it is, and that 2/3rds of native bicuspid aortic valves never need to be replaced, then perhaps it would be worth taking my chances to see if the native valve can take me the distance. Yes it might not. And that is certainly a risk, but none of these options is ideal! From what Dr. Cameron said, it seems like the connective tissue issue in the aorta might be a related gene that is right next to the gene that causes the bad valve. That is, that they might often occur together, but that the tissue of the aorta is weak doesn't necessarily make my BAV worse than the "average" BAV -- if there is such a thing. I'd welcome someone showing me that I have that wrong.

I'll bet that you like to go to Vegas or casinos. You are overanalyzing everything!

I've drawn black beans several times:
1. I was told in 1990 that I had mitral valve prolapse but that I'd probably never have to have surgery.
Duh!!!!!!!!! Yeah, the odds were very good I'd never have problems or have to have surgery, but I drew the black bean.
2. Most people are never the victim of an aggravated rape/kidnap attempt. Been there, done that on 2/29/1980. I don't want to know the odds of such.
3. I almost drowned at age 8 or 9 in an apartment swimming pool.

Needless to say, I don't go to Vegas or casinos. I'd lose my shirt if I did.

If I knew I had a 1 in 3 chance of needing AVR because of a BAV and I was needing to have OHS anyway for an aneurysm, I'd get the AV replaced at the same time.

 

[cbdheartman]

I'll bet that you like to go to Vegas or casinos. You are overanalyzing everything!

Probably! But that's my personality. Exam every angle. Think through all the possibilities then make a decision. The earliest I am going to have surgery is July 30 so I have time to think!

I see your point, but if there is a strong chance my valve will continue to work well, and I can avoid anticoagulation and push any future surgery off for many years until a time it is likely that a less invasive valve replacement will exist, I think I might take that chance.

 

[Ross]

I'm still trying to figure out why you'd want to avoid taking a pill over more surgeries. I can tell you've been told a whole crock of crap about anticoagulation. Every single person who's choosing a valve has. I haven't seen one person come in here and say anything different. It's always "If I can avoid ACT".......... Well 1+1=58 I guess.
RCB's been on it for nearly 49 years, Dick isn't very far behind him and they'll both tell you what I've been trying to tell you.

I'm asking myself, is this guy a defense or prosecuting attorney? How does one think like this and go to court in front of Judge?

 

[cbdheartman]

I'm still trying to figure out why you'd want to avoid taking a pill over more surgeries. I can tell you've been told a whole crock of crap about anticoagulation. Every single person who's choosing a valve has. I haven't seen one person come in here and say anything different. It's always "If I can avoid ACT".......... Well 1+1=58 I guess.
RCB's been on it for nearly 49 years, Dick isn't very far behind him and they'll both tell you what I've been trying to tell you.

I'm asking myself, is this guy a defense or prosecuting attorney? How does one think like this and go to court in front of Judge?

Hey now! No need to be testy. (It is precisely because I can look at all sides that I can go up front of the judges and make an argument.) There obviously are reasons for choosing against the mechanical valve, right? Are they legitimate? Why are there folks -- especially young folks -- choosing pig valves? Isn't it legitimate to not want to be on a medicine for the rest of your life? To not want to deal with the minimal, but perhaps annoying issues involved with coumadin? Not everyone deals with blood thinners in the same way. I spoke to someone yesterday who had been on a blood thinner and found it really a pain and told me to avoid it if possible. I am processing what you are saying and putting in through the blender. It may be that I go the mechanical valve route -- but I want to understand why people choose differently.

 

[Bina]

Only YOU know what YOU can deal with.
For myself, I knew that I could NOT deal with repeat surgeries....so I take Coumadin.
No big deal. Life goes on.

 

[lucky401]

If you don't mind I'd like to give an analogy. My 1998 Villager mini van needed a timing belt change at 100,000 miles. The mechanic said that job was expensive and basically the whole engine needs to be taken apart. So he said that while the engine is taken apart he was changing the water pump and something else in there (I can't remember what it was) along with the timing belt even though they weren't broken. If he didn't change the water pump at that point and it eventually went I would have to pay to have the engine taken apart again.

Now, I know this is a very simple type of analogy but I think it is is basically the same with your heart valve. Why go through all that time, pain, recovery and yes expense only to have to possibly face it all over again.

Why would I want to gamble that my water pump wouldn't break and then face being stuck somewhere and the whole expense of the labor all over again. Well I think the same theory applies to your heart valve. Yes heart surgery is a lot easier now than it was years ago but even with that it is not a fun thing to go through. Your whole life basically stops for a few months depending on your recovery and no one I know would want to go through a surgery like that twice if they didn't have too.

So I implore you to really consider having the whole valve job done at one time and know that you can hopefully go on with the rest of your life without facing more major heart surgery.

Believe me, and I think most people will agree, once is enough!

Barb

 

[catwoman]

Barb:

Yeah, at 100,000 miles, I'd change my water pump if I was having something else done at the same time. Have been stranded twice because of a fuel pump on same vehicle!

 

[ShezaGirlie]

-- that if my native valve is functioning well, which it is, and that 2/3rds of native bicuspid aortic valves never need to be replaced, then perhaps it would be worth taking my chances to see if the native valve can take me the distance. .

I don't know how old you are, but according to my cardiologist ten years ago, a bicuspid aortic valve goes south around age 55 which I was when I had mine replaced. So, I had all those young years with no meds, no worries, no nada until all of a sudden I was SOB and ended up in ER and had the valve replaced. There was no damage to my heart, only the valve.

I wouldn't have anything replaced until it definitely needed it and there was no question left unanswered. No telling what kinds of new and innovative procedures will be common place in the future. Course, I don't ever buy those extended warranties either.. I always say, "We have no guarantees in this life."

 

[Ross]

I spoke to someone yesterday who had been on a blood thinner and found it really a pain and told me to avoid it if possible.

O.K. what did this person say that was so negative? I'm betting they had a manager that didn't know how to dose it correctly, there INR was all over the place and most likely at some point turned noncompliant and I'll bet anything they were told a bunch of crap and didn't eat a normal diet too. We spend countless hours in the anticoagulation forum listening to all sorts of myth and garbage that people have been told and have spent just as much time getting them straightened out. We are not pros nor Doctors, but our track record of bringing the unstable to stable is amazing. What's funny about it is, we get it. Why can't the pros and Doctors?

I'm not being testy and as it may appear to be that way, I'm still trying to shine some light where your not seeing any. Like I said, until you've had this surgery, you have no idea what your in for and you could very well only want to do this once, but you won't know that until you experience it.

As I've said before, it doesn't compute to me why anyone would subject themselves to more surgeries if it can be avoided. Sure young people get tissue valves and most are happy with them. Lets see if they still feel the same way after their 2nd, 3rd or 4th surgery and other things start failing.

Well I broke my promise to stop posting to you about this. I apologize. I'll leave you alone to ponder on.

 

[cbdheartman]

Ross I do appreciate it! And I am sorry I took the lawyer crack as being testy. I do appreciate you shedding light on all this and I have taken a look at the anti-coagulation (sp?) forum and am going to look at that website referenced there more. So I do appreciate.

What are the real worries about blood thinner? What if I get in a car accident?

 

[Nancy]

What if you get into a car accident w/o Coumadin?? If an artery gets sliced open in the accident, it won't make much difference whether you are on Coumadin or not.

If you need surgery after such an accident and you are on Coumadin, they will give you vitamin K or fresh frozen plasma which works FAST, and whisk you off to surgery.

Joe had to have a pacemaker installed and he needed it fast, and his doctor was going on vacation, so with Joe's blessing, the doc gave him vitamin K and he went right in to have it done.

It's not the ideal thing, but I want you to know that there are ways to handle Coumadin patients.

Most of the time, if you need surgery or another procedure, and have to go off Coumadin, you will be bridged with Lovenox.

Joe was on Coumadin for 30 years plus.

Why not look into the newer On-X valve. It has many interesting and promising points, one is a possibility of lower dose Coumadin, and they are doing a research study on aspirin and Plavix combined, as an alternative to Coumadin. Hot Rod Harry just made a choice for this valve, if a repair is not possible for him. Al Capshaw (member here) knows a lot about that valve.

 

[John]

I had the surgery your asking about. The surgeon told me prior to operating that he wouldn't know until he got in there if I would be receiving a mechanical valve or if he would save mine.This was based on info he got from the heart cath doctor. I had asked the surgeon during the consultation how many surgeries he had performed and what was his complication rate. Based on my age (50) and the experience of the surgeon I let him make the decision.

 

[pamela]

Rest assured the surgeon will have seen more BAVs than any of us ever will (unless we're Thoracic Surgeons) so usually, their advice is pretty reliable. Why don't you ask your surgeon to have a really good look while your chest is open and then give him the ok to do what will be best for you.

Why not keep your native valve if possible and then face the possibility that you may well wake up to a prosthetic valve? Then it all comes down to what kind of valve you'd like to receive and that's a question for another forum.

 

[john79t]

CD
Yes some folks go through life and don't even know they have a bi valve. However, when they strart to calcify you can throw thath out the window. Especially as young as you are. Mine was suspected at 40 but not discovered until 50. At that time I had mild (Still had to do the Army PT test including 2 mile run) now at 61 it is sever and has to be replaced. Most also believe that the extra force from the smaller opening contributes to the aorta problem. Kind of like using a smaller hose to unstop a clog in plumming. If they repair it you may get a few more years out of it. However, the odds are that you will have another surgery for replacement and or another anuerysm. If you do nothing with it or have it repaired just know that odds are you will need another surgery later. If you are willing to live with that then its your choice. If it can be repaired (not a great option for a bi valve) then I would at least do that. In the end it is your choice. The odds of another surgery go way down with a mech. valve at your age. The odds are if you repair it or do nothing to it when you have surgery it will need another surgery later. Just have to decide which option you are willing to live with.