Heart Surgery sooner or later ...Considerations right or wrong

[mxtexas]

First off..thanks for taking the time to read about my situation.
I am a 45 year old male who was been diagnosed with a BAV having moderate-severe regurgitation. Along with this, the BAV is accompanied by a 4.9cm aortic root (up from 4.5 or so a couple years ago).

My cardiologist has been monitoring me for the past 5 or so years and has had me on BP medication to reduce the pressure on my Aorta. Up to this past August, the regurgitation had been mild to moderate. Nonetheless, my cardiologist recommended that I consult with a Cardio Thoracic Surgeon. This surgeon is considered an expert when in comes to Aortic valve repair. At his recommendation, I had a TEE performed that confirmed that my BAV has progressed to mod-severe and my root is 4.9. This surgeon informed me that it was "probably time to come in and have it done". He says that my TEE meets all of the criteria that would deem the valve repairable...and that surgery is "certainly reasonable". However, I can also wait an monitor this, if I wish; yet he cannot confirm that my valve will be in a similar condition in the future to render it repairable. He says that today he has 94% confidence in ability to repair, yet in 5 years (if my situation goes that long), he cannot foretell what condition the valve would be in...could be the same ..could be worse. This isn't to mention that the regurgitation may get worse and the aneurysm may get larger going forward thus forcing my hand, anyway.


Here is my dilemma: I am in the awkward situation of not being told to "Get in here now", but I know that this heart ailment is out there and very real. Further to this, I am in a situation where I have sound insurance and a schedule/financial ability to get this done; however, that may not hold true even a year from now. It feels odd to tie a big medical decision to your ability to have health insurance, but that is a truth in this country (not a political statement BTW)...just the truth. Additionally, I"m in pretty decent health today...who knows what tomorrow brings? I don't want to take this whole situation too lightly (who would, right?), but I'm concerned that once you get the ball rolling with invasive surgery are you always under the specter of worry (repair value/future surgeries, etc). Do I want to borrow that concern sooner rather than later?

Of note, I did have a second opinion from another surgeon who did not feel that I was ready for surgery, but this surgeon was not confident in his ability to repair. My first surgeon really specializes in these valve sparing procedures, thus his confidence is much higher vs. my 2nd opinion. I certainly respect both of these professionals, but my chosen surgeon would be surgeon #1, regardless. He is the expert in my situation, hands down.

Apologies as I posted my situation in another forum, but I wanted to include the insurance coverage component and solicit feedback from this group.

This forum has been incredibly informative for me.

Thanks again,

mxtexas

 

[knotguilty]

You have a lot to consider. I hope you figure out what is best for you. I assume surgeon #1 will replace the valve if he has to. You will need to figure out what you want to do with both the best case and worst case senarios. If you only have regurgitation and no stenosis, he may very well be able to repair it. It does sound like the aneurysm will have to be addressed though. I will say, I have never lived my life on what if. I think I can safely say that you will be much better after surgery and most likely won't have to face any more surgery any time soon. Good luck mxtexas.

 

[Agian]

The aneurysm repair should last for the rest of your life, as may the valve repair. [I would ask him how long the repair is likely to last.]
If the repair doesn't last forever, it is likely your next valve will be a TAVI (?15 years)

 

[epstns]

Think of it this way - if surgeon #1 feels that he has a shot at repairing your valve, and he feels it "is time" it is really worth considering just getting it done. I had aortic stenosis and was forced to wait until my valve was "clinically ripe" to be replaced. By waiting, I feel that I may have risked damage to my heart. Having surgery sooner might have reduced that, and made for a better outcome. (Not that I'm complaining, but recovery may have been smoother, and maybe I wouldn't have needed the pacemaker.)

As long as the docs are willing, you are ready and able (schedule and insurance/budget), I would strongly advise you to consider earlier intervention. Waiting rarely gains anything. At my age (63 at implant), they were happy to have me wait so that they could recommend a tissue valve due to my age. At your age, you are not going to be able to wait that long, and they will probably recommend mechanical regardless. So, if it is likely repair/or mechanical, why wait?

 

[tom in MO]

If you can get a repair job and the aneurism done now, but the future holds a good possibility of no repair...I'd ask how long the repair will last. Do your doctors believe it will be a final solution (i.e. no future valve replacement, anuerism prepair or OHS)?


Ask your self what is the benefit of waiting compared to the benefit of having it done now. From the way you present the "dilema" it reads like you want it fixed now.

 

[mxtexas]

According to the surgeon, he is confident that he can repair. He believes that it should be a durable fix....but as anything...nobody can guarantee anything.

 

[Midpack]

Hi!

The most important thing is to find an excellent cardiologist/cardiac surgeon and trust him about surgery timing. In this forum, it is usual to read opinions favoring early surgeries. The reasoning goes like "the sooner the better", "your valve will not get better, so why not get it fixed now", "if you wait, your heart will enlarge so much that it will never return to a normal size after surgery", etc. etc. Of course there are some valid points there, but you also have to seriously consider what the surgery implies and what are the associated risks.
OHS is a VERY MAJOR surgery. Nowadays, it is done with mortality rates that are in the order of 2% (assuming no comorbidities). Hats off for medical advancements for achieving a so low mortality for such complex procedures. But 2% is not insignificant. It means that 1 out of 50 people actually die. And, besides this, there are also a myriad of major/minor complications that can result from the surgery. Having to receive a pacemaker as a consequence of some damage done to your heart electrical system (not a big deal, but it is certainly better to not need a pacemaker), for instance. Or acute renal failure. And the list goes on. Dont get me wrong. Valve surgery is life saving and is usually done with excellent results. But it is certainly not comparable to a galldbaldder removal. I would certainly not press for surgery. If you are asymptomatic and doctors beleive that, for the moment, a wait and see approach is better, trust them. Dont let anxiety bring you to the surgery table too early. Waiting too much is bad, but having surgery too early is also a bad idea, in my opinion.


Good luck with your decision.

 

[Agian]

Fair enough Midpack, but it's not like he can avoid OHS. The 2% mortality is not insignificant, but this includes people who are much older. People that mark time, until there is no other choice. For a healthy man in his mid 40s I reckon it is much lower.

If it was me, I would seriously consider getting in with a repair, whilst I can. I'd pin the surgeon down more. Best case scenario is a permanent fix, what's the minimum it will last? If he says 'at least 15 years' then you may never need another op. 15 years is a long enough time for TAVI to become mainstream. I'm just saying what I'd be thinking in your shoes.

 

[tom in MO]

I was 55 when my BAV was fixed. My surgeon said the 2% was primarily high risk elderly patients and was not relevant to me. I asked about his mortality rate and he laughed and said he did not know. However, he's only lost one patient in the last few years and that was due to their overall condition and advanced age.

 

[Paleowoman]

I had surgery when I was aymptomatic. I was told 2% mortality when I was 60 and that if I waited until there were symptoms, i.e. the beginnings of left ventricular failure, that mortaily jumped to 20%. I think my surgeon was a bit over the top about this, but they have to say what the mortality is so you know the odds - usually though it is the elderly or people with other complications that make up the mortaility figures….and inthe elderly they jump to around 3.4%. Saying that, I once spoke with a doctor who'd had major life saving surgery, not heart surgery, and his surgeon told him that there was 1% mortality with that operation - the doctor turned to the surgeon and said that if he'd been told he had a 1% chance of winning the national lottery everyone would consider that good odds ! Another way of looking at this. BUT the % mortaily if you do nothing is 100% !

PS - in the UK the mortaily figures, plus number of surgeries and adjustment for the complicatedness of surgery (some surgeons do more complex or risky cases than others so their mortality figures will naturally be higher) for each surgeon are published for patients to view on the Society for Cardiothoracic Surgery's website: http://www.scts.org

 

[MrsBray]

42/f/BAV/mechanical March 2014 surgery. I could have waited a little longer, my AVA was at .79 cm(2). Repair was not an option for me. I chose to go ahead with my surgery for several reasons:
1. I'm a CDL driver, and cannot pass the DOT physical with an AVA <1.0, so I would have been out of work until after surgery anyway.
2. I know the longer I waited the thicker my heartwalls would get as a result of my body compensating for the deteriorating valve. Once enough damage is done, it may not be reversible.
3. I was not (and still am not) optimistic about health insurance coverage in my country. At the time, I had good coverage that would allow my choice of surgeons and hospitals, with a (relatively) minimal out-of-pocket expense. I felt (and still feel) that the quality of my insurance coverage will decrease in the coming years as the cost increases.

 

[Bushman]

I am in a very similar situation to you so I know what you are going through. You should absolutely go and get another opinion regardless of what you proceed with. I will have talked with 5 surgeons before I have my surgery done and so far 2 gave me very similar information, 1 was somewhat different in his position and the other 2 I haven't seen yet. I will also have the surgery done sooner than later as I believe there is no reason to wait only to have my body deteriorate and go info surgery in worse shape and possibly have complications for no reason.

 

[Elgato]

After consulting with two local surgeons I was still uncertain how to proceed. I ended up mailing all of my test CD's and DVD's to the Cleveland Clinic for a third opinion. They should be able to make recommendations regarding both what needs to be done, when you should do it and your current risk level. I believe they are still ranked #1 for CTS and their statistics are incredible. I strongly recommend asking for Dr. Gosta Pettersson