Anyone Put Off Surgery Pros and Cons?

[Melanie Gaines]

Hi Everyone:
I am told that I have severe mitral regurgitation (4+), however I feel fine (I think). My mother has moderate-severe regurg and she is 75 and fine so far (has had it all her life with NO surgery). The surgeons and my cardiologist are pushing for OHS for repair of this badly floppy bilaterally prolapsed mitral valve. I am only 49 years old. Surgery is scary enough, but I am of the mind "leave well enough alone". I would hate to have a surgery create more of a problem, or not be able to repair the valve and end up with a mechanical one.

On the other hand, I am told that I could harm my heart in the long run by ignoring this condition and cause irreversible damage. I am being monitored every 6 months. Has anyone ignored the advice of their doctors and been okay for several years after such a diagnosis? Or vice versa has anyone had a severe adverse event due to delaying surgery.

Any feedback is greatly appreciated...

Melanie

 

[Turkey Hunter]

On the other hand, I am told that I could harm my heart in the long run by ignoring this condition and cause irreversible damage. I am being monitored every 6 months. Has anyone ignored the advice of their doctors and been okay for several years after such a diagnosis? Or vice versa has anyone had a severe adverse event due to delaying surgery.

Exactly,
ignoring it could cause irreversible damge to your heart.
Having it repaired or replaced is your best route.
It's not near as bad as you think.

Ben

 

[Tom F.]

If both your cardio and surgeon are telling you to get the surgery done, I suggest you do it. If for your peace of mind you want a second opinion, fine. But you risk damage to your heart if you put this off too long, and that kind of damage can make the surgery more risky further down the road. Or is could kill you.

 

[Adrienne]

Without going into my whole story which is very long, the answer is yes, I had an adverse event (even two if you count the endocarditis in 2004). After that, I was going from doctor to doctor getting opinions, and to make a very long story short, I ended up with atrial fibrillation in August 2005. To make another long story short, I was very lucky and had both a mitral valve repair which had to be done a different way than the way he usually does it because there was so much calcification, and I also had a MAZE procedure for the A-Fib. I have been extremely fortunate, and my heart is beating regularly (with the occasional extrasystolic beat).

In retrospect, if the technology and know-how had been the same 10 years ago, and had I known at that time how bad my valve was, I would have done it then!!!

 

[Cooker]

Hi Melanie,

I will just tell you what my PCP and my Cardio said. "The time to have surgery is before symptoms show up. I was 49 when I had my AVR and yes it is scary. I picked mechanical because I wanted the best chance at not having to have another OHS. The thing that suprised me is how much better I feel.......I was slowing down all along and did not even know it or thought it was age

I wish you luck in whatever you decide. It was realy not near as bad as I thought and most of my fears were unfounded.

Cooker

 

[Phyllis]

Melanie, I would definitely put 100% faith in whatever Dr. Cohn tells you. Don't take a chance that you could have irreversible heart damage!

 

[Karlynn]

In my mind there really are no good pros in putting off surgery of a 4+ mitral regurge indefinitely. You are doing permanent damage to your heart. Whether it's enough right now to be seen on an echo is questionable. But I don't think it's worth the risk. Not to mention that the worse shape your heart gets in, the harder the surgery and recovery will be. If they are pretty sure they can do a repair, that's usually better than a replacement. And replacements are even very good.

At a severe regurg, you have to be experiencing symptoms. Your body may have become adjusted to a slow onset of them so you might not even realize that you have "slowed down". After surgery and recovery (which does take a long time.) you will probably not believe how good you feel.

For someone your age, the risk of surgery is very small, if you are in otherwise good health. When you say you are only 49, I kind of chuckle. Most people view heart issues to be an older person's problem. I was 32 at the age of my mitral replacement. And that was 15 years ago Tuesday of this week.

We often get in to debates here over what the better valve choice is, tissue or mechanical. But one thing we always say is that the only bad choice is making no choice at all, because you end up losing your life. Don't fall in to that catagory.

 

[Nancy]

Quote--"leave well enough alone". Sorry but it doesn't sound like your heart is "well enough". Cardiologists are sometimes the ones who want to try to stretch things out a bit before surgery, but in your case, your cardiologist is telling you it is time NOW to get this problem taken care of.

It is something that will not go away, and will deteriorate with time. Many things could happen to your health if it is not corrected.

Many people say they feel fine and are shocked when their card. tells them it's time. Your heart enlarges when things in there are compromised, in an effort to keep your blood moving through the heart. During this period of time, you may not be symptomatic, but it does show up in your test results. If it goes beyond a certain point (and no one can predict what point that is for YOU), your heart may stay in this condition permanently. By getting things taken care of, you have a good chance that your heart will get back to a more normal size.

Eventually, you WILL be symptomatic and it could happen fast.

Everyone here has been scared at first. Stay with us and we will help you to face the necessary surgery.

My husband was 44 when he had his first valve surgery.

Best wishes.

 

[pipersmith]

Melanie,
I am 34 - and I have the symptoms without any damage to my heart (AV). I will echo what others have said - don't put it off. AND - the younger and healthier you aer at the time of surgery, the better the outcome and less amount of risk.
It comes down to - would you rather have the surgery now, and feel better sooner OR feel worse for a longer time, and risk IRREVERSIBLE damage to your heart? At that time, the benefits of surgery will be less AND you will likely have to have it anyway.

I know that the gravity of OHS is intimidating - but, modern medicine offers you a second chance at a long and healthy life. We are really lucky, if you think about it like that

Best of luck to you in your decision.

 

[WayneGM]

I echo the sentiment here. Once the permanent damage is done it's too late. Even if somebody did ignor the advice and it worked out ok, the fact is that everyone's different, so I don't think I'd base my decision on that.

I was feeling fine when my doctor discovered my leaky valve out of the blue during my routine check-up. I also thought about leaving well enough alone since I was feeling fine. However the GP, the Cardiologist, and the Cardiac Surgeon were all saying I could choose to put it off but recommended I have it repaired especially because I'm young (51). I really couldn't think of a good reason to delay other than I was scared, while these experts all had the same opinion.

Now that I've done it, I'm so glad I did. I do feel worse than before only because I went from no symptoms that I noticed to having to recover from the surgery itself, but that's temporary. I actually have greater peace of mind as my heart is now working as good as new, and no permanent damage was done. In fact while they were in they fixed an atrial septal defect that wasn't noticed before. Also, as the cath was part of the pre-op, they confirmed no blockages, etc, as I always worried about needing a by-pass some day since my Dad had two. It wasn't nearly as bad as I thought it would be.

Best wishes with whatever you decide.

 

[Marguerite53]

Ditto all that's been said here. If a significantly reputable cardiologist and surgeon are advising you to do the surgery now, please do not wait. I'm sure it is difficult to press on since your mother has managed to "dodge the bullet" for so long, but unfortunately you are not your mother. Everyone here is different. Many of us have lots of symptoms and then bounce back quickly anyway! Some of us have no symptoms and have a heck of a long recovery. The best you can do is realize that the condition simply will not get better on its own. In many cases, as it starts to get worse, it gets worse much faster.

You are approaching a time when a tissue valve would seem more acceptable. They are beginning to use them in younger and younger patients, it seems. I'm 52 and chose tissue, with the shaking head of my cardiologist but the blessing of my surgeon. We all have our reasons. There is absolutely nothing wrong with choosing mechanical! Please do not discount its value. To choose mechanical and have your surgery at the appropriate time is FAR less risky than waiting until some statistical approximation of age when choosing tissue might be recommended.

There is MUCH debate over the 2 types of valves, here on this site. I'm sure you can do a search and start reading.

Good luck. We are very glad that you found us before your surgery. It really isn't as tough as it sounds. You will have to give up a month or two of normal living to recover, but most of that is to allow the sternum to heal and the heart to get used to its newfound perfection. It is not filled with pain and trauma...rather it is slow paced and protective.

Keep posting. We're here for you now!

Marguerite

 

[PegB]

I guess we're a biased group, thankfully, because no one is saying "yes, it's better to wait and die!!!!!". At this stage you most likely still have the luxury of picking a convenient time for your surgery, which really helps to be able to get everything in order. I'm four weeks out of surgery (mitral repair) after having a 4+ severe regurgitation. Although my surgeon did say, I probably could have waited a few more months, I chose to get it over with, and I'm really glad I did. Once again, I echo everyone else, and although it's really hard to believe....It's not that bad AT ALL!!! You might want to look into some surgeons in your area, and get their opinions. Also having a TEE will give you a better indication of how much longer you can safely wait

 

[sue943]

I knew (please note the past tense) two people who were told they needed OHS. One decided it was too scary, she might not wake up afterwards, and one who decided that he would have it later, just not yet.

Sadly both are no longer with us. She died at 46, he at 61. Such a dreadful waste, both such super people.

 

[Christina L]

My cardiologist watched me by

My cardiologist watched me by

testing every four months. As soon as my ejection fraction went down the first time, he told me it was time for surgery. Looking back, I would rather have just done the surgery and skipped the monitoring as my heart most likely had damage done to it, however small.

Around here people say the cardiologist is cautious and the surgeon is all for doing the surgery, but I found it the other way around. My cardiologist told me it was time but Dr. Cosgrove read my echo and told me I could wait a little longer if I wanted. ??? Go figure.

Truly, the surgery is doable and thanks to God that we live in such a time of medical miracles.

Christina L

 

[catwoman]

Melanie:

Ditto to what the others have said.

We become so accustomed to small changes in how we feel and look that we don't feel/see the obvious. Once you have surgery, you'll probably realize that you weren't 100% up to your physical ability for a long time.

I was concerned (read: TERRIFIED) 3-4 weeks pre-op that I wouldn't make it into the OR -- cyanotic, couldn't talk or walk without having to stop for breath, constant yawning, the most intense fatigue I've ever had in my life, etc., etc. plus a very noisy mitral valve that anyone could hear.

It doesn't take long to cross the line from no noticeable symptoms to very obvious ones. Life is too precious to procrastinate.

 

[Janea]

Hi Melanie, I had a severe 3+ leak in my mitral valve. The doctor wanted to wait till I was symptomatic before doing the cath and TEE. Because concerns relating to childbirth I pushed for the tests. They did the tests and said I needed surgery ASAP. My heart almost didn't rally after the surgery because it had been damaged from going so long. The left ventricle didn't know how to pump with the tiny new hole it had to work with. My surgeon said that if we had waited any longer my heart would have been un-operable. I was so lucky/blessed that my heart was able to rebound from that surgery. I am so glad I didn't wait. Now, this might not be the case with you...but the question is, how do you know? Are you willing to take the gamble that comes with putting off surgery? Surgery is scary, but the odds are in yoru favor that everything will turn out great. Good luck to you in your decision.

 

[lynn]

I wouldn't do it!

 

[baradonai]

When I found out about my condition...

When I found out about my condition...

...two people I work with told me their stories.

One had an uncle who didn't want to have his surgery and within a couple of years his heart had enlarged to the point that surgery was no longer possible. He spent the last year of his life with just enough energy to sit in a lazy boy and stare at the television.

The other was a woman's husband. He was dead within 2 years.

I had already determined to have my mitral valve surgery, but their stories cemented it for me.

 

[aussiemember]

Hi Melanie,

I just wanted to say I do understand how you feel. I have mod/severe regurg and have been told that once my numbers change in any way I will need to have surgery before the heart is damaged. My cardiologist said that it cannot be left indefinitely - I WILL need surgery at some stage and preferably before symptoms begin. Yet, I have a 14 year old daughter and there is a part of me - the emotional scared part - that wants to wait as long as possible so that she is older and better able to deal with any consequences. I sort of rationalise that if I can hold off 4 years then I will have at least made 42 and her 18!! So you are not alone in your feelings - and I'm sure others on here have felt the same way.

But I have hung around this site now since February and seen countless people go through OHS and come through it - and so many have said that it is not as bad as they feared and they wished they had done it sooner. So when my cardiologist (who I totally trust) says its time - I will be lining up as well - it certainly won't be easy - but I won't have a choice - it will be my ONLY chance to see my grandchildren!!

 

[ALCapshaw2]

PRO - NONE that I can think of.

CON -

You could DIE before you get your heart repaired

You WILL fret and worry for however long it takes to finally decide to get 'FIXED'.

SOME of our members reported that their valves were in MUCH worse condition that the tests suggested and a few reported that their valves literally DISINTEGRATED in the Surgeon's Hands.

As said earlier, Rates of SUCCESS for first time surgeries are 98% for patients under age 60.

Rate of DEATH for severely diseased Heart Valves is 100%.

There is NO GOOD REASON to procrastinate once it has been determined that your valve is seriously diseased.

OH YES, MANY report they have NO symptoms BEFORE surgery, only to come back and say WOW, I feel so much BETTER! Go with the numbers. Get fixed before it's too late.

'AL Capshaw'