Upcoming surgery for AVR

[calgol]

Hello everyone. I'm new to this forum, but I've found it extremely helpful with the huge number of questions and concerns I've had as a prepare for my upcoming AVR. Thanks!

I'm 45, and like many of you, I was shocked at the news that I would need OHS to address a leaky valve. At this point, I'm starting to come to terms with it, and I'm targeting a surgery date in mid-December. It's very scary, but if I need it, I want to get it over with so that it's not hanging over my head. This forum has been able to answer many of my questions, but I still have a few that I thought I would put out there if anyone has insight or experience:

1. I live in the Albany, NY area. I would prefer not to travel far for surgery. Does anyone have any experience with the local hospitals?
2. Minimally invasive sounds better to me than a sternotomy, but is it a more complex and therefore a riskier procedure?
3. Any other advice to build confidence and calm the nerves?

Thanks!

 

[pellicle]

Hi and welcome

2. Minimally invasive sounds better to me than a sternotomy, but is it a more complex and therefore a riskier procedure?

myself (just a widely read lay person not a specialist) it feels more like something done to make the anxious feel less freaked out compared to "the regular".

From what I've gathered (I'd never heard of it before I joined here) the healing times are similar (people with regular sternotomy also report being fine and good to go in short times too) and there is always the possibility that they will need to do the full sternotomy anyway should "the need arise" during surgery. Things may just be such that they just do it.

3. Any other advice to build confidence and calm the nerves?

Well having had 3 sternotomys and that the most recent one was about 5 years ago now I can't say I actually care anymore what I had. What I have is far more important; that is a functioning valve that will endure longer than me.

Pick any point in time that is somehow memorable and difficult more than 5 years ago. Perhaps you hadn't thought about it for a long time till I asked you. That's what surgery is and should be. Something which will be past and gone and what remains is you and the life you lead.

Of course when you are leading in to it you will be somehow obsessed by it ... I know that I was actually "looking through" the surgery to recovery and life after that when I had the last. I was more worried about my wife and how she would cope and my dad (who was having a surgery of his own ....)

I've had the benefit of 3 (god I've never thought of it that way before) and so I can say that the fictional Bene Gesserit (from Dune) litany is a good one and of course is based on so many other things from many religions.

its a long and convoluted book, but if you are looking for something to read in recovery (or before) I recommend it.

Best Wishes

 

[cldlhd]

I can't recommend any hospitals in the area as I live outside Philly but US news and world report has detailed rankings. Not sure if you're definitely having it replaced or if repair is an option. If it is then a surgeon who specializes in that is needed. A surgeon who does repairs can do replacements but the converse isn't always true. As in some who do replacements don't do repairs, not to make replacement seem simple in any way just that it's more common.
As for full sternotomy I had one at the same age as you back in February 2015. I wouldn't prioritize a mini, I'm sure there are some recovery advantages but from my layman's perspective I have to believe a full sternotomy gives better access.

 

[honeybunny]

Welcome, calgol. Glad you are getting the answers you need from this site. Like you, I wanted to get it over with as soon as possible and underwent surgery four months after diagnosis, delayed only by my surgeon's month-long vacation.

I grew up in northern NJ but can't recommend and specific hospitals there. I imagine there are top-notch facilities in the City. Have you consulted yet with a surgeon? He/she would need to have rights at any hospital you were considering. So if you have not consulted yet, select a surgeon and take it from there.

Regarding fears, I calmed mine by reading others' experiences on this forum, and by reminding myself that my issue was fixable. Those soccer players killed this morning? Can't fix 'em. Your heart valve? Fixable. For me it was a matter of perspective.

Best wishes on all things to follow.

 

[calgol]

pellicle - Thank you. It's comforting to hear from others who have been through the same thing - or more, as in your case!
cldlhd - Thanks. I am having it replaced. There is no option for repair with me. It's leaking badly. I have a tricuspid aortic valve, but somehow, one of the cusps is no longer functioning as it should. I hope to get some answers as to why from the surgeon after he removes it.
honeybunny - I have consulted with a surgeon. For many reasons (extended family, kids) I'd like to have surgery close to home. I trust the surgeon I've spoken with, but I wonder if I should be going to a place like Boston for a surgery as big as this. The local hospitals have good reputations, but of course they are not at the top of all of the rankings like Cleveland, Mass General, or Brigham and Womens. I just want to make sure I'm as comfortable as possible with my decision if I stay local.

You have the same perspective I do, and it's helped me come to grips with this. This problem is fixable. I know of several people with equally serious problems that are not.

Thanks everyone for sharing your experiences. Sometimes I still can't believe that this is happening, but hearing from others has helped me stay positive and confident.

 

[AZ Don]

Between NYC and Boston you have 4 of the top 10 hospitals for heart surgery: http://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery. I've always taken the position that for such an important surgery it is probably worth going to a top regional hospital. If not, then I would take a closer look at the skill of the surgeon. Hard to do objectively but for a small fee you can access rankings by other Doctors: https://www.castleconnolly.com/ and ratings by patients for free: https://www.healthgrades.com/. I had my first surgery at Mayo Clinic in Phoenix (top hospital in AZ), but I may need another someday and they are not on my current insurance, so I have a top surgeon picked out that works at one of the higher ranked local hospitals.

 

[Juliemoon]

Hi,

I just joined a few days ago, but like you am awaiting surgery and finding so much helpful info here. Just wanted to let you know that my surgeon assured me he would have all the access he needed for AVR and aortic root replacement with a mini, and also promised quicker recovery time. I found this when I researched it at the time:

[h=4]CONCLUSION:[/h] Mini-sternotomy AVR is technically challenging with longer CPB and aortic cross-clamp times. However, with increasing surgical experience, it offers results comparable to those achieved with conventional AVR, and with acceptable cosmetic results.

Hoping all goes flawlessly, and wishing you the best!

 

[pellicle]

Hi

pellicle - Thank you. ...
You have the same perspective I do, and it's helped me come to grips with this. This problem is fixable.

I noted Eng in your bio and assumed engineer. So we have that attitude in common.

I strongly agree with AZ Don above. Go to the best hospital. There is far more to this than the surgeon, there is the entire team including the ICU team.

Lots of things can be mismanaged other than the surgery, so you want a strong chain not just a strong link.

Best Wishes

 

[calgol]

Thanks, everyone.

Pellicle, yes, you are correct.

Another question: Has anyone referenced the data available on hospitals and providers on the Society of Thoracic Surgeons website? What has been your experience with this?

 

[DougWyndham]

Must admit after my sternotomy I thought Id have a bad scar forever! Amazing how quickly it heals and the scar although visible is minimal. Took a while for the swelling etc to go. With luck opting for the metal valve reduces the chances of having to revisit OHS

 

[cldlhd]

Thanks, everyone.

Pellicle, yes, you are correct.

Another question: Has anyone referenced the data available on hospitals and providers on the Society of Thoracic Surgeons website? What has been your experience with this?

I visited it a few times but checked out my surgeon more on Castle Connelly and the hospital on U.S. News. I believe my surgeon of choice is the president of the Society of Thoracic Surgeons for this year, which me feel good about my choice. I agree with the notion that the hospital is about as important as the surgeon.