S/P Ross Procedure 12 yrs ago

[Guest]

I’m from Des Moines, IA and am coming up on surgery again. My left ventricle is moderately dilated and aortic valve is moderately regurgitating. Just got put on coreg and lisinopril to manage new heart failure. EJ is down to 40%. Any thoughts on mechanical vs tissue? I’m really not thrilled with the thought of blood thinners, but am really hoping this can be a last surgery. I’m only 40. Also, my insurance covers Cleveland Clinic, Mayo, and MOCHA. I used The University of Iowa for the Ross Procedure, but that surgeon is no longer there. Any recommendations for post Ross surgery?

 

[pellicle]

Like many of us here on warfarin we usually find it no big deal.

I too would feel less surgery is better than more, and at yor age the mechanical gives you the best chances to have "one and done"

My personal thoughts on all these matters are in my blog

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

My experience and advice on INR management is here (u self manage my inr testing and doses)

http://cjeastwd.blogspot.com/search/label/INR

The posts are in most recent first order, but I'd recommend you read them in oldest first.

Best Wishes

 

[ottagal]

I I’m really not thrilled with the thought of blood thinners, but am really hoping this can be a last surgery.

Welcome, Glad you found us. Yes, this is one of the hardest decisions some of us have to make.. however, .seems like you have made yours...you are hoping this is the last surgery. Pellicle has some excellent posts to guide you through INR management. He has also been down the re-surgery route and has lots of experience.

Thinking of you. When you make your decision, don't look back...

 

[dick0236]

.......... Any thoughts on mechanical vs tissue? I’m really not thrilled with the thought of blood thinners, but am really hoping this can be a last surgery. I’m only 40.

The "blood thinner".......actually it is an anti-coagulant that does not thin the blood, is really not a big deal for anyone who "can walk and chew gum at the same time".

At the current level of artificial valve development the only valve that has a chance of lasting a 40 year olds lifetime (+/- 45 years) is a mechanical valve.

The issue of "valve life vs warfarin use" has been a frequent discussion since I found this forum 11 years ago.......and actually for about 30+ years before that and we still haven't found the answer.........

BTW, I, realistically, didn't think my valve would last more than 20 years..........boy was I wrong........and with only one warfarin "screw up".

 

[pellicle]

Pellicle ... ​has also been down the re-surgery route and has lots of experience.

Often I wish it wasn't so ... But thanks for the kind words mate

 

[DDT77]

I’m from Des Moines, IA and am coming up on surgery again. My left ventricle is moderately dilated and aortic valve is moderately regurgitating. Just got put on coreg and lisinopril to manage new heart failure. EJ is down to 40%. Any thoughts on mechanical vs tissue? I’m really not thrilled with the thought of blood thinners, but am really hoping this can be a last surgery. I’m only 40. Also, my insurance covers Cleveland Clinic, Mayo, and MOCHA. I used The University of Iowa for the Ross Procedure, but that surgeon is no longer there. Any recommendations for post Ross surgery?

Similarly had Ross 20 years ago (Milwaukee Children's). Mechanical put in almost three months ago (Duke), due to AI and ascending aortic aneurysm. Some literature suggests aneurysm is fairly common after Ross. Might want to get idea of what is occurring (diameter) of Aorta. I thought i saw reinforcement of Aorta now used to mitigate chance of aneurysm...

 

[spartangator]

Welcome to the forums. Glad you're getting some good info, and I'll second ottagal 's advice about making a decision and going with it. We're so fortunate to live in an era with effective treatments that work. Keep us updated, please. All the best.

 

[tom in MO]

Per mechanical vs. tissue thoughts:

• At 40, your only hope of no re-surgery is mechanical or death by a jealous spouse I chose mechanical for that reason.
• From my perspective, warfarin therapy has two significant down sides.
  • First you will take about 2-3 times longer to stop bleeding. This is bothersome when you cut yourself, more of a pain during and after future surgeries or life threatening when severely injured. Cuts and surgeries are readily manageable but severe injury is an unknown risk.
  • Second you will be restricted from taking some medications that can cause bleeding. For me, with arthritis, this means I have limited access to Non Steroidal Anti-inflammatory Drugs. This can literally be a "real pain".

 

[tommyboy14]

Hello,

given that you had the ross procedure, if your only problem is regurgitation (I.e. not stenosis), then it might still be possible to save your autograft.

There is a lot of evidence in Europe, that Valvesparing surgery on a dilated autograft can help, where the only issue is regurgitation.

https://www.ncbi.nlm.nih.gov/pubmed/25282166
https://academic.oup.com/ejcts/article/38/3/326/431583
http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.867.4653&rep=rep1&type=pdf

This could help save your autograft and preserve the Ross in your case for sometime longer. However, you would leave yourself open to another surgery down the line.

If you want to minimise the number of Surgeries, you may want to consider a ross reversal operation. This operation attempts to put the potential two valve problem created by the Ross back to a one valve operation. I.e the autograft is being put back into the original pulmonary position, while replace the aortic valve with a mechanical.

Given that otherwise, your pulmonary will require replacing one day as well, this is probably the right approach if you want to avoid more than one surgery going forward.

https://www.ncbi.nlm.nih.gov/pubmed/21863656

The doctor who invented this 'Ross Reversal approach', Gosta Peterson operates at Cleveland Clinic and you may want to speak to him.
https://my.clevelandclinic.org/staff/3006-gosta-pettersson#biography

 

[Superman]

Some literature suggests aneurysm is fairly common after Ross. Might want to get idea of what is occurring (diameter) of Aorta. I thought i saw reinforcement of Aorta now used to mitigate chance of aneurysm...

It’s not the procedure chosen that can lead to aneurysm. Simply having the congenital heart defect with BAV increases the likelihood of aneurysm, regardless of valve fix. I went mechanical in 1990 and ended up with an aneurysm 19 years later. I only mention because I don’t want anyone thinking, “If only I would’ve have done this, then that wouldn’t have happened.”