Confuzzled!?!

[dmoses1]

This place is great. I am new, and I've learned so much in the last couple of days. I have two questions (concerns). Please give me whatever info. you have.

1. Reversal--Is there anything that can be done to reverse the regurgitation?

2. Progression--Is there anything that can be done to slow or stop progression?

Thanks so much. Looking forward to your replies.

 

[Ross]

Dawn the only thing that will reverse regurg is a valve replacement.

It may be slowed down with medication, but it's certainly not a fix.

 

[dmoses1]

Hmmmm!!!

Hmmmm!!!

Dawn the only thing that will reverse regurg is a valve replacement.

It may be slowed down with medication, but it's certainly not a fix.

Not exactly the answer I was looking for.

What medications slow it down.

 

[Ross]

You'd have to talk to the Doctor on that one. Some use Zestril and other types of that family of drugs, but it usually is pointless. If the valve is bad, it's bad, nothing is going to make it better other then replacement.

 

[gijanet]

Hi, Dawn........

Hi, Dawn........

Welcome to the group. Sorry you are here, though, if you know what I mean. Katie was given pretty stout doses of Captopril (an ace inhibitor), but it only bought us a couple of years, and her regurgitation continued to slowly get worse. Depends, too, on what valve you are talking about. Do NOT take this as the gospel, as I am completely out of my element in the aortic valve arena, but I don't think Ace inhibitors help at all with the aortic valve. Hopefully, some of the gurus will wander along soon - although Ross is definitely a guru, but knowing which valve would help. Regardless, meds will only buy you a temporary fix, if at all. Been there. Done that. Is a repair possible, or is a Ross procedure an option - again, would depend on which valve?

Well, just wanted to say hi and welcome you. Can't help but notice you are another Texan. If you have to have heart problems in TExas, then at least you are in the right place there in Houston. BTW, did you evacuate during Rita or did you opt to stay put? Boy, what a mess! Glad y'all came out pretty good. The Bolivar peninsula is our home away from home and was glad to see that they came out pretty light, too. Many hugs. J.

 

[terryj]

My husband was also given an ace inhibitor but after 6 months the decision was made to replace his bicuspid valve. Before surgery he had severe regurgitation, at his last echo the regurgitation was minimal. The doctor said at our age(54 & 55) that my heart probably had minimal leakage also. His surgery was four years ago on 9/11/01.

 

[francie12]

We were told that the only thing to slow the progression of the regurgitation is medication--Lisinopril, an ACE inhibitor, in our case--and no weight lifting or any isometric exercise. Best of luck. We are rooting for you.

 

[dmoses1]

Welcome to the group. . . . Well, just wanted to say hi and welcome you. Can't help but notice you are another Texan. If you have to have heart problems in TExas, then at least you are in the right place there in Houston. BTW, did you evacuate during Rita or did you opt to stay put? Boy, what a mess! Glad y'all came out pretty good. The Bolivar peninsula is our home away from home and was glad to see that they came out pretty light, too. Many hugs. J.

Thanks for the warm welcome.

We left and went to East Texas for a few days. It was like a mini-vacation (once we were sure Houston wasn't going to be hit badly).

Yes, it's the aortic valve. I am currently taking NORVASC--it's supposed to slow down the progression; but, that doesn't mean a lot to me since I don't really understand much about the process.

I am learning a lot just from reading you guys' posts. It's a little scary at times, though.

 

[dmoses1]

My husband was also given an ace inhibitor but after 6 months the decision was made to replace his bicuspid valve. Before surgery he had severe regurgitation, at his last echo the regurgitation was minimal. The doctor said at our age(54 & 55) that my heart probably had minimal leakage also. His surgery was four years ago on 9/11/01.

Wow!!! I'm glad he's better. Mine is not severe, at this time; but I haven't heard much discussion about how quickly things progress from mild/moderate to severe.

I know that the schedule for re-eval for mild regurg is 2-3 years, with no meds. My cardiologist has seen me twice this year (echos both times), and wants to see me again in the next 9 months. She says the regurg is mild, though.

 

[dmoses1]

We were told that the only thing to slow the progression of the regurgitation is medication--Lisinopril, an ACE inhibitor, in our case--and no weight lifting or any isometric exercise. Best of luck. We are rooting for you.

I had no idea about the weight-lifting. I had fully intended to begin a toning regimen at the YMCA. I don't much like aerobic exercises 'cause they make me tired (and after working all day, I don't have the energy). Course--I hadn't gotten around to the resistance stuff either--'cause I was tired (LOL).

 

[ALCapshaw2]

Hello Dawn,

Progression of valve disease can vary widely but since you are already symptomatic (getting tired easily) you should probably be monitored at least annually if not semi-annually. We have a saying that goes "the worse it gets, the faster it gets worse" so if your symptoms become more noticable, CHECK IT OUT.

Another point that becomes quite obvious after reading a lot of these posts is that most cardiologists like to take a conservative "wait and see" approach while most surgeons prefer to operate BEFORE there is further (and possibly PERMANENT) damage to the heart.

First time Valve Replacement Surgery is a highly refined art with exceptionally high success rates (98%) so to my mind, the risk of further damage from waiting far exceeds the risk of corrective surgery. IMHO, it is best to let a SURGEON make the call on when to replace your valve.

In the mean time, do some research in the Valve Selection Forum so that you can make a more informed decision on what type of valve you would prefer, THEN find a surgeon who has lots of experience with that valve (not all surgeons are familiar with all valves or all procedures such as the Ross Procedure).

Medication can slow the progression, but damage is still being done to the heart. At some point, the walls / muscles WILL become enlarged, and there is a point of NO RETURN, i.e. Permanent Damage to the Heart. That is why I believe surgeons are in a better position to decide when 'it is time' to operate.

'AL Capshaw'

 

[dmoses1]

Hello Dawn,

Progression of valve disease can vary widely . . . . Another point that becomes quite obvious after reading a lot of these posts is that most cardiologists like to take a conservative "wait and see" approach while most surgeons prefer to operate BEFORE there is further (and possibly PERMANENT) damage to the heart. . . IMHO, it is best to let a SURGEON make the call on when to replace your valve. . . Medication can slow the progression, but damage is still being done to the heart. At some point, the walls / muscles WILL become enlarged, and there is a point of NO RETURN, i.e. Permanent Damage to the Heart. That is why I believe surgeons are in a better position to decide when 'it is time' to operate.

'AL Capshaw'

I originally went to my PCP who sent me to a cardiologist. How do I see a surgeon regarding the matter?

 

[bvdr]

I originally went to my PCP who sent me to a cardiologist. How do I see a surgeon regarding the matter?

Dawn, in my case my cardiologist told me he would research and make a referral to a surgeon within a week. I waited much longer than that and when I found out he was going to be out of town for several days and had not yet acted on the matter, I started researching and made my own appointment. I gathered up my medical record and requested that a copy of my echo films and cath films be sent to the surgeon for evaluation. My insurance doesn't require referrals to see a specialist so that is also a factor to consider.

Some surgeons require a referral and some don't. Some of the big university hospitals have clinic days that make it easy to make an appointment and have a consult. If you know who you want to see then call that office and see what their requirements are.

I hope everything goes well for you.

 

[tobagotwo]

My insurance didn't list anyone with valves as a specialty. My cardiologist hadn't recommended anyone. So, I "cold-called" some of the major hospitals and lucked into an excellent surgeon.

The surgeon who does your valve should be doing at least a hundred of valve and highly similar surgeries a year. If not, I submit that you might not want to be his practice dummy.

Yes, you can ask. And no, they don't take umbrage at it.

Best wishes,

 

[ALCapshaw2]

You could ask your Cardiologist for a referal to a surgeon, or, since you are in Houston, just call the Texas Heart Institute and ask who has a lot of experience with the type of valve disease you have AND the type of replacement valve you prefer as your first choice.

You may also want to start a new thread asking for recommendations of surgeons in the Houston TX area.

'AL Capshaw'

 

[KristiinSD]

I actually had inprovments in my mitrl regurg

I actually had inprovments in my mitrl regurg

from moderate to mild...It seemed wierd to me, but my cardiologist swore by his results.

Kristi
mr

 

[Karen]

aortic regurgitation

aortic regurgitation

I had an echo about 5 weeks ago that showed "moderate aortic regurgitation." It was the first time that aortic regurgitation had shown up in an echo. When I had a left and right heart cath 3 weeks later, my cardio said that he couldn't see any regurgitation -- that it's possible for regurgitation to actually "come and go" to some extent. I was relieved about the findings with the heart cath, but it won't be a huge surprise if the regurgitation reappears in future echoes...

 

[tobagotwo]

Moderate regurgitation is not apt to come and go, although mild or trivial regurgitation can. More likely, that was an error in the echo tech's judgement. This is another reason why doctors should order a second echo to check the results of the first one before putting their patients through an intrusive procedure like a double-sided heart cath.

Just to recap, there is nothing that has been proven to the FDA to slow regurgitation or stenosis (statins do not work for this). There is certainly nothing to reverse them, other than surgery. There are some drugs that will enable the heart to receive less damage from them, but they usually affect quality of life, and most patients wind up taking them until their hearts are in trouble again anyway, just trying to forestall surgery.

Best wishes,

 

[Karen]

Moderate regurgitation is not apt to come and go, although mild or trivial regurgitation can. More likely, that was an error in the echo tech's judgement. This is another reason why doctors should order a second echo to check the results of the first one before putting their patients through an intrusive procedure like a double-sided heart cath.

Just to recap, there is nothing that has been proven to the FDA to slow regurgitation or stenosis (statins do not work for this). There is certainly nothing to reverse them, other than surgery. There are some drugs that will enable the heart to receive less damage from them, but they usually affect quality of life, and most patients wind up taking them until their hearts are in trouble again anyway, just trying to forestall surgery.

Best wishes,

Actually the double sided heart cath was done more in response of the increasing pulmonary artery pressure shown in the same echo. My cardio had said that, more important than the values in the echo regarding pulmonary hypertension was the progression, or worsening, of the pulmonary artery pressure. There seemed to be a significant increase from the echo done in April and the one done last month. Also, there was still uncertainty about how "symptomatic" I have been. I feel wheezy all the time. I, too, have thought an inhaler would be appropriate. The regurgitation issue was incidental to these other concerns.

The bottom line is that the cardio could not see any regurgitation. And there was NO pulmonary hypertension. All very good news, of course. The downside is that I'm not going to feel great --- ever?! The pressure, tightness, wheeziness, in my chest is evidently "just" costochondritis. Although my coarctation surgery was through my side and the ribs, my cardio believes it could be be a factor in the problem. In spite of heart risks, I am trying Mobic now. (But the cardio felt it an appropriate "risk" because he had just determined there were no thrombus issues.... But for how long do I enjoy that reassurance...)

Also, the cardio looked for any sign of an aneurysm in the ascending aorta and declared there was nothing to worry about. That was my other biggest concern (along with the PH question). He did include in the report something about a "dimple in the prox Desc Ao." Any idea what that means?

All in all, the heart cath was reassuring -- and reassurance was something I was looking for big time right now...

Karen

 

[dmoses1]

Huh?

Huh?

Okay! Now I'm really confuzzzzed!!!!!