Decision to Electively do the surgery now.

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Hockey Heart

Well-known member
Joined
Mar 1, 2011
Messages
82
Location
Evanston, IL
Hello,

I am new to this community. I introduced myself on the Bicuspid Valve page earlier today.

I would like to get your feedback and insight on a very difficult decision my wife and I are faced with. I understand that we are the only ones who can make this decision, but I'd love to get some insight from people who may have faced similar situations.

My Story: I am a 36 year old male in the Chicago Area. Diagnosed at birth with BAV. Eccho in September 2010 revealed I will need the valve replaced in approximately 2 years. My wife is currently pregnant with our first child and due in September.

The decision we are faced with is whether or not we should wait to have the surgery when it is needed in approximately September 2012 or whether we should Elect to have the surgery now (May) before our lives get really complicated with a child and possibly being pregnant with a second child (we will try again when baby is 6 months old due to the fact it took over a year to conceive this baby with the aid of fertility treatments). My wife is going to be working full time following her maternity leave and I would really hate to be out of commission during my 6-8 week recovery leaving it all on her shoulders to take care of me, an infant and work full time. If I have the surgery done in May I should be fully recovered by September to help with our baby and any other babies we might have in the future.

What do you guys think?
 
It depends on a few things, one is what are your results (measurements) now? Do you have copies or the results from your echo? Unless you fall below the "trigger point" (or have symptons) then you might have trouble finding someone to operate. Unless of course you were already told you could have surgery now. Also it might be more than 2 years that you need surgery,and personally I believe unless there is a reason to have the surgery right now, the longer you can keep your own valve the better. Things are always improving, so who knows what improvements might be made before you "need" the surgery.

Now of course if you already have reached the point that some doctors recommend surgery or are having symptons, then that would be different and maybe it would be better just to have it done
 
Hockey,

Here is MY take. Depending on where you numbers are on the grand scale.. if they are getting down to surgery numbers. For instance, my valve opening is at 1.0 and people typically need surgery around 0.7. It depends though... I would do the surgery NOW but I have a feeling my insurance won't budge on that one. I am of the belief that since this is a degenerative issue, why not just do it now? Others have a different outlook. Why am I just waiting around to get a couple of years out of an already defective heart. Also, I feel the younger I am, the better.

Just my take... others will come along.

I know these are big decisions and I can totally relate.
 
Thanks for the Feedback. As for my numbers: I don't have Stenosis. I have a Blood Regurgitation Issue with my BAV so the pressure makes the Aortic Root dilate until the point where you would suffer a rupture in the Aorta if untreated. My number for the dilating Aortic Root is 6.4. I have been told that 7.0 is when you "need" the valve replaced. However, my cardiologist has given me the option to do it now based upon the surrounding circumstances in my life.

Deux of Us brought up a great point about insurance that I hadn't thought of....will they not approve the surgery until I reach the 7.0 number or at least have a doctor's written opinion that it is medically necessary? Another Bridge for another day I guess.

Also wanted to add that I was in the hospital for 5 days in January for Endocarditis that has cleared up now.

Thanks again for the great feedback.
 
I like the way you are thinking, myself. If you know surgery is inevitable, whether in 2 weeks or 2 years, why not git'r'done so you can get on to making more bambinos? Find a surgeon and get his input.
 
If surgery is imminent in two years....or less, I agree with your thinking. Getting the surgery now and then going on with raising a family makes good sense and would remove a concern from your thinking and planning. I also wonder how your insurer will react to the idea, although you seem to have the docs on your side.
 
Hockey Heart said:
My number for the dilating Aortic Root is 6.4. I have been told that 7.0 is when you "need" the valve replaced. However, my cardiologist has given me the option to do it now based upon the surrounding circumstances in my life.
Click to expand...

I am not an expert in dilated aortic roots since I had a totally different problem. However, it seems to me that from everything I have read on this sight, 5.0 (or maybe 5.5) seems to be the point where they operate.

I am sure that some experts will chime in soon.
 
HH, you speak about two years until surgery. After my first heart cath in November, 2008, my cardiologist told me that surgery was probably two to four years away. By July, 2009, however, I was in distress and my surgery was performed, none to soon, two months later in September. You cannot assume that your problem will follow a gradual declining curve. You do know that it will not improve. As for recommendations from doctors, you might also want to consult with a surgeon now. It is likely that your insurance company will follow that recommendation.

Larry
 
Hockey Heart said:
Thanks for the Feedback. As for my numbers: I don't have Stenosis. I have a Blood Regurgitation Issue with my BAV so the pressure makes the Aortic Root dilate until the point where you would suffer a rupture in the Aorta if untreated. My number for the dilating Aortic Root is 6.4. I have been told that 7.0 is when you "need" the valve replaced. However, my cardiologist has given me the option to do it now based upon the surrounding circumstances in my life.

Deux of Us brought up a great point about insurance that I hadn't thought of....will they not approve the surgery until I reach the 7.0 number or at least have a doctor's written opinion that it is medically necessary? Another Bridge for another day I guess.

Also wanted to add that I was in the hospital for 5 days in January for Endocarditis that has cleared up now.

Thanks again for the great feedback.
Click to expand...


I don't want to be an alarmist but if we're talking about 6.4 centimeters in diameter, then in my mind and if it were me, it's time to do it now. I'm having a hard time believing no one's referred you to a surgeon yet. I don't know man, maybe you're mistaken on the numbers. 7 cm was the criteria like 25 years ago.
 
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Thanks again for the great feedback. I think I may have my numbers messed up. Sorry. I think the numbers I am referring to involve the dilation of the left ventricle itself and not the root. I believe that once that measurement reaches 7.0 the ventricle will not shrink after the valve replacement surgery, but if the number is less than 7.0 your ventricle will shrink following the procedure. I found some good information on this at stanford.edu.

My cardiologist made it very clear that the surgery is likely not going to be needed for 2 years and possibly more. However, as a father himself, he agreed with the thinking of doing it now before the baby is born. He also asked every other cardiologist in his group with kids and they all agreed. Currently, we are trying to make an appointment with two surgeons. When we decide which we like best, we will schedule the surgery for May (hopefully).
 
Hi HH,
I'm a 42yo mum and had a Ross Procedure to replace my unicuspid aortic valve on Feb 22 (I was on the operating table EXACTLY two weeks ago - can't believe it). I've been home for a week and am feeling tired but really good. The tiredness is more from not being able to get a good night's sleep (hard to get/stay comfortable). I worried, worried, worried about the surgery for years, then months, then weeks, then days. It's so good to have it behind me now. If your doctors are willing to do it now, I'd recommend doing it. No, hospital isn't fun and you definitely feel crappy for a week or so, but it's so great once it's over. But, of course there are risks with any surgery and you do need to be sure you understand those.
(Also, while we have different anatomy issues, I might also add that a few years ago my cardio said I'd probably need the surgery in my mid-40s. Turned out to happen when I'm not quite 43yo, so things can change.)
Good luck, Alli
 
I totally see your train of thought. It will get busy once you have kids. How is the pregnancy going? Do you know for sure it's not multiples? Keep in mind that things don't always go according to plan. The baby could come early and mix up the schedule a bit. Your surgery will be stressful for your wife. Is that an added risk you both are willing to take? Also your wife will want to divy up her vacation carefully between your surgery and her maternity leave. Hopefully she won't have to fly for you to interview surgeons. It's good that you are trying to plan, but leave some wiggle room here and there if you can. Let us know what the surgeons say.
 
I decided to get it taken care of right away, I could have waited a few months but I figured if I wait the anxiety was going to just eat away at me. I went from diagnosis to surgery in 15 days and to be honest that about about 10 days too long ! If your life is less complicated now then I would say get it taken care of.
 
Thanks Allisoninoz! Glad to hear how good you are doing following your procedure. Unicuspid Valve??!! I didn't know there were valves with just one flap. I agree with you and I just want to get it over with.

Hi Catdog! The pregnancy is going really good so far. We are 13 weeks on this Thursday. No multiples. We are being extremely cautious with this baby because it is our first and we had a miscarriage over a year ago and it took us a very long time to conceive again after several months of fertility treatments. We ultimately conceived with IUI (artificial insemination). Our biggest concern in making the decision on whether to do the surgery while pregnant or to wait was whether my wife's stress would harm the baby. We spoke with our Reproductive Endocrinologist and my wife's OB/GYN and both agreed that the stress would not harm the baby and that studies have been done showing that severe stress does not make miscarriage, premature labor or birth defects more likely. In fact, both doctors were of the opinion that it may be better for my wife if we have the surgery before she gives birth because after birth she is at risk for post partum depression and stress reactions can be magnified during this time. Yes, the baby can come early and the surgery can be delayed but there is no way to predict that now. Currently, our due date is September 15. We are hopefully going to be able to schedule my surgery in May. That would leave 4 months before our expected due date. If all goes relatively according to schedule I think we should have enough wiggle room. Also, both surgeons we are considering are local. Thanks so much for all your great points!
 
This really is a question you need a surgeon's input IMO

I agree with your thinking assuming a surgeon agrees with it.
If your cardiologist is willing to recommend you to a surgeon's consult now, that would be the course I would take.

We have found here the worse your valve gets, the faster it gets worse. That is, indeed, what happened to me. I had two OHS in four years but though my valve stayed stable for a little while, it quickly went to bad enough for surgeon to schedule me in within 5 weeks.

As you are starting your family now, seem to have insurance and stability, why wait if it is inevitable you will SOON need this surgery? I agree it would be easier on your wife for you to be well into recovery when she has the baby.

You need a surgeon's opinion, IMO.
 
Hi JKM7! Our Cardio has made arrangements for us to meet with 2 surgeons to see who we like better. I assume the surgeons are also on board with doing the surgery now but we will find out for sure at the appointments i guess. Thanks for the feedback!
 
Though I used the same surgeon both times, same hospital, (Massachusetts General) my cardio and he worked together often and he had reviewed the CD's of my angio and TEE and test results, he would not recommend or refuse surgery until we met, he examined and spoke with me and DH and we, together, agreed it was time for my valve replacement.

I would imagine that is the case with most surgeons. They want to meet and examine their patients prior to making any surgery decisions.

Sending you all Best Wishes.
Please let us know how it goes. This is a very supportive group that will help you in every way possible to make going through this surgery as easy on you as we can. Only those of us who have been there really know what you are going through.
 
Adrienne said:
I am not an expert in dilated aortic roots since I had a totally different problem. However, it seems to me that from everything I have read on this sight, 5.0 (or maybe 5.5) seems to be the point where they operate.

I am sure that some experts will chime in soon.
Click to expand...

I had the same thought you did. With a 6.4 root I wouldn't be waiting.
 
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