New member and new situation

[NH_Male]

Hi everyone,

I have been lurking for a week or so and have found the site to be helpful, moving, educational, and very personal. It feels like a home already.

I had my aortic valve replaced in November 1991 (I was 22 then) with a St. Jude's valve. The surgery was successful, my recuperation went well except for a clot thrown a month after my surgery that wound up in my colon. Back to the hospital I went and was in there for a month the second time.

Since then I have had no issues other than the occasional elevated INR or bruise. That is until recently. I had my standard echo a couple of weeks and my cardiologist called me, wanting to talk about the results. Never a good intro to conversation. He told me that since my last echo a year ago my ascending aorta had dilated from 4.3 to 5.2 and he wanted to do a CT scan for a closer look. Panic set in.

I had the CT scan and convinced myself that the new dilated number was a mistake. No way that can happen to me, I am young and healthy. Wrong. CT came back with the ascending aorta at 6.0cm. Time to talk to a surgeon. My doctor is referring me Brigham and Women's hospital in Boston, one of the best in the country for aneurysm repair. Needless to say, I am worried and this couldn't have come at a worse time, middle of the semester, my wife expecting a baby, etc etc. I guess there is never a good time for these kinds of curveballs.

Anyway, I just wanted to ask if anyone had undergone a second surgery after valve replacement for aortic repair. Are the risks higher this time around? I read about scarring and how that could complicate the attachment of the dacron tube to the aorta, etc. Is that a real concern?

While I am not thrilled at all about going under the knife, I certainly don't want to have a dissection. Just trying to figure out what all my options might be. Although at 6cm, seems like I won't have much choice.

Thanks for listening. Love this site.

 

[Mary]

Hi, and welcome to the Forum!

I can think of a few members who have encountered a similar situation--the valve's replaced but the aorta goes south and needs to be repaired.
If yours is truly at 6.0, there's no doubt but that you need to have surgery fairly quickly. Don't forget that there's a relationship between your body size and the size of the aneurysm.
Mary

 

[NH_Male]

Thanks, Mary.

Good point about body size. I am 6'4 250lbs. Even at that size 6cm seems pretty darn big.

Funny, when my cardiologist broke the news, he seemed to be less concerned than I was. He made it seem as if this was all ok, no need to get crazy, and let's see what the surgeons say.

Meanwhile, I read that at 6cm the risk of dissection is much higher.

 

[KAJ]

First of all, welcome to the site ! As you can probably tell, this sight is a gold mine of information. The members are very helpful and supportive.

I cannot specifically answer your question as my aneurysm was repaired at the time of my valve replacement. However, I did have major chest surgery (not heart related) when I was 22 in 1982. There was most cerainly scar tissue, but I do not think it was much of a problem for the surgeon when he replaced the valve and repaired the aneurysm. I am certain members who have a second heart related surgery will soon post thier experience. Yours must certainly be repaired and the sooner the better. Please do not wait. We are all pulling for you. I keep you in my prayers.

You are correct, it is never a good time to when situations like this arise.
I am curious, was your valve biscupid?

Karl

 

[geebee]

Welcome to VR.com.

I know, from reading on this forum, that 6.0 is dangerous territory for an aneurysm. I am happy to hear you are getting it repaired and, hopefully, quickly.

Scar tissue is always a concern but there are so many advancements that I am sure things will be handled well.

There is never a convenient time for surgery but the options are not very pleasant to consider.

Best of luck to you.

 

[NH_Male]

Thank you for the kind words.

Karl, my valve was indeed bicuspid from what I remember.

Does that make a difference now, when dealing with the aorta?

 

[DavesMom]

Hi!

Welcome to this wonderful site.

From what I understand any redo carries a bit more risk. I had surgery for the first time when I was 20 and again at 42. Following the first surgery I developed a lot of scar tissue which caused my right ventricle to become stuck underneath my sternum. This caused quite a problem during my second operation but luckily the surgeon could handle it. The surgical report does say, however, that if I ever have to undergo a third surgery it will be very risky.

So needless to say I never want to hear the word surgery again...unless it's preceded by the word plastic. : )

Take care and best of luck.

 

[Phyllis]

Welcome to the forum. I can't help you with your questions but I can tell you that you are going to one of the best hospitals you can go to. **** had his AVR surgery there and we can't say enough about how good the care was and how attentive the entire staff was. Stay with us and keep us informed.

 

[NH_Male]

DavesMom,

I can't get my head wrapped around surgery #2 let alone #3. I would imagine that taking care of the aneurysm now would basically end my heart surgery run. What else would go wrong after valve replacement and aneurysm repair?

Another question in general.. when I had my procedure in 91, they opened my chest. Now I read about the less invasive surgeries. does this all depend on the hospital? The idea of doing this and not cracking open my chest sounds pretty nice.

Thanks again for all your help.

 

[NH_Male]

Thank you Phyllis. The more I read about Brigham and Women's the more relaxed I feel about the surgery. I am being referred to Dr. Bolman.

By the way, I love your signature:
****: Minimally Invasive AVR December 18, 2003

"Minimally Invasive"-- I hope that is in my future too!

 

[Susan BAV]

Hi Evan and Welcome!

One thing that jumped out at me from your post was the fact that your cardio said it was time for you to see a surgeon. We've had a lot of conversations on this site about how cardios tend to be very conservative regarding surgery, leaning toward treating valve issues with meds. So when a cardio actually recommends his/her patient see a surgeon, WOW!!!

I'm assuming you're a bicuspid? If so, you must read more on the bicuspid foundation website.

Post more; ask lots of questions. I'm glad you found this site and hope you find the answers you need. And congratulations to you and your wife on the baby soon-to-come!

 

[PJmomrunner]

Hi Evan:

Welcome. I'm originally from Newburyport and have family in and around Exeter. I would feel very comfortable going to Brigham and Women's. My mom had complications with a pacemaker implant done at Anna Jacques and had that sorted out at Brigham and my uncle has had three total him replacements there (not that that relates to what you're going to have done, but...). B & H tends to be cutting edge in everything they do.

That said, I don't think anyone's doing minimally invasive for ascending aorta replacement surgery. Deep hypothermic circulatory arrest with full sternotomy is state of the art in that department, and no doubt what they will do for you. Also, I believe that there is no statistical difference between a first and a second OHS--you should definitely ask though. Of course, there are always risks, but the stats don't change until #3. Dacron is for life though, so hopefully this will be your last surgery.

Let us know when your surgery is scheduled and we'll help to see you through it!

 

[NH_Male]

Thanks PJ!

I could have sworn that I saw somewhere that they are doing minimally invasive aortic repair at that Cleveland Clinic. I could be wrong though. I have been reading so much material since the news hit yesterday that its all starting to blend together.

When I woke up from my initial AVR surgery I vowed to never go through that painful surgery again... and here I am. So maybe the minimally invasive mirage may be just wishful thinking. I guess overall I am just trying to minimize the risks in my head. With two little ones and a wonderful spouse I have much more to lose now than I did at 22. And that makes me very scared.

And Susan, you are right about my cardio, but get this. He is a new cardio for me. When I had my initial meeting with him a month ago, he did not want to do an echo on me this year since he had an old echo from 2006. I insisted that he do one in 2007 just to be safe. He again said he didnt think there was a need since I have been stable since 1991; he wanted to do an echo every two years. I kept insisting and he finally said yes. Aneurysm detected.

 

[Phyllis]

Thank you Phyllis. The more I read about Brigham and Women's the more relaxed I feel about the surgery. I am being referred to Dr. Bolman.

By the way, I love your signature:
****: Minimally Invasive AVR December 18, 2003

"Minimally Invasive"-- I hope that is in my future too!

Unfortunately, "minimally invasive" means that it is a 4-5 inch incision rather than the whole chest. The stay in the hospital is the same as well as the recovery, although **** never had any problems with pain from the incision. I'm not sure if they can do minimally invasive when it comes to an aneurysm- maybe someone else on the forum knows. I know that they can not do it if your need bypass surgery as well as valve replacement. All good questions for your surgeon.

 

[Lynlw]

Hi I am sorry you are going thru this especially since the timing could be better. I just wanted to say My son is 18 and when he was 17 he had his 4th OHS, I don't know about scarring by the aorta, but alot of the problems surgeons run into on redos , is the scrring inside your chest. Justin heart was fused to his sternum before his last surgery, but we knew it and when we were choosing a hospital and surgeon to let operate, one of my questions was how many cases have you had like Justin and how will you open him, We were lucky in that most of the surgeons that operate on kids/adults w/ CHD have alot of experience w/ redos since alot of the CHD need a 2-3 stage repair as well as surgery thru out their lives. SO there wasn't a problem when they opened him and actually his 4th surgery was his quickest recovery, he was out of CCU less than 24 hours later and home 4 days later. So I hope it makes you feel alittle better that alot of the surgeons have experience on operating 4,5 times on someone so are pretty good at knowing what to do when something comes up. I believe Brigham has an adult CHD center w/ Childrens. Speaking of adults w/ CHD maybe beside this forum if you posted at
http://www.achaheart.org/index.php you might find other that have gone thru the smae thing you are, Lyn

 

[Magic8Ball]

my valve was indeed bicuspid from what I remember.

Does that make a difference now, when dealing with the aorta?

Yep, what it means is that the surgeon/cardio should have replaced the aorta the first time around as it was always going to bugger up at some point in the future.

Unfortunately i think this way of pro-actively doing the aorta at the same time as the valve is only a recent train of thought...

As for minimal invasive i don't think there is much chance of that, they need to get way into your chest to replace all of the ascending aorta so a small hole would only complicate things....i told my surgeon he had my permission to go from ar**hole to earhole if it helped with the outcome

Make sure you get DHCA and that they remove as much of the aorta before the arch as possible....the alternative is to just clamp and chill but this leaves a bit of the ascending aorta under where they clamped which can be prone to blow in the future also, especially as its been under a clamp for several hours....the DHCA is slightly more risky but not by much, however the long term outcome is much better.

Regards.

 

[aussigal]

Hi and WELCOME!

I dont think there is ever a really good time for major surgery although anytime sure beats an emergency surgery for a ruptured aneurysm...with a dissection you could suddenly be looking at something like a 5% chance of making it through as compared to about 95% if you do it now.

I wouldnt be terribly concerned about the minimally invasive either...I would want the surgeon to have the best possible view and room to work in.

Good Luck with everything...and keep us posted.

 

[Bradley White]

Hi,

I had 2 open heart surgeries that were a little more than 6 years apart (first when I was 17, second when I was 23). Lyn is correct in her optimism. Due to vastly improved survivorship for CHD patients multiple surgeries are becoming fairly commonplace. Scar tissue can be an issue, but experienced valve surgeons are used to these complications and work through them with proficiency.

The mortality/morbidity risk for my second operation (which included aortic valve and full root replacement) was quoted as being 1-2%, which is pretty much what I was quoted for my first operation. I recovered quicker from the second operation than the first. So while anxiety is likely to be your primary emotion leading up to surgery, there is room for optimism. Good luck.

Brad

 

[Superbob]

Hi Evan. You've gotten a lot of great replies here in a short period of time. For now, I just wanted to add my welcome. I too have had the full valve and root replacement, and "minimally invasive" wasn't an option. Would certainly want my surgeon to have plenty of room in which to work in such a situation.

Whether you have questions or just want to "vent," you can always turn here. You have friends here now who will want to be with you each step of the way.

Cheers,

 

[Karlynn]

Welcome Evan! You were just a teenager when you had your AVR. We had our St. Judes replacements the same year. I'm glad that other than you first early problem that things have gone well with it.

I'm glad you've had lots of responses. It's the weekend and sometimes it gets a little slow here on weekends. But apparently it's too cold in a lot of places for people to be busy with other things.

I know you are scared and concerned about everyone in your life, not just you. But can I suggest doing your research, finding the best info you can, get a great surgeon, schedule the surgery quickly, then.....start looking on this as a positive thing. After all, it needs to be taken care of. You don't have a choice. It's going to be successful. Stay positive.

You have many shoulders to lean on here. Best wishes.