Second surgery and valve choice

[Richard]

Hi

I havent visited the site really for some time, I had Ross procedure done around 2002 and immediatley afterwards was told the new AV was leaking, I didnt have any problems so just regular check ups. Recently I have been getting steadlily more out of breath when excerting myself and tightness in the chest and very tired. After trying my best to ignore this i have been ti see doctor who has advised the leak has worsened and also the direction of the leak means it is stopping the MV opening correctly. I go in for a TEE in next few weeks to confirm but looks as if second surgey likely. I wonder if anyone can advise the risks of a second surgery ie how much more risky than first? and also this leads me to valvce choice as I was put off mechanical last time as only 32 but seems I am not faced with many options this time?

I am still hoping they may say doesnt need doing and that the condition improves but any advice would be appreciated?

Thanks

 

[Mary]

Hi, Richard.
I'm very sorry to read of your troubles.
Here's one link to a study that compared the risk of aortic reops. Since you'll face replacement of two valves (or will you?) the risks might be different.
http://jtcs.ctsnetjournals.org/cgi/content/abstract/129/1/94

If I were 32, and was looking at a second surgery to replace two valves, I would go mechanical. If I were looking at a second surgery to replace the aortic and leave the pulmonary, I might go tissue. Thankfully, it's not my decision at this time, because that is a tough choice.

Please keep us updated, if you don't mind.

 

[Richard]

Thanks for that. Dont think it will be 2 valves but just the AV, the mitral valve is being restricted but they dont think it is damaged. Can I ask why you say tissue if just the one but mechanical if 2?

 

[Bina]

Hello Richard and welcome!
Here in my small town a woman I know got a Ross procedure which failed after 6 years.
She was then well into her forties and the surgeon wanted to lower her chances of re-ops, so he recommended a St.Jude aortic valve.
Richard, if you are now around age 38, it is not an easy choice.

 

[Curtsmum]

Hi Richard, my son as just had a second surgery but on his mitral valve. The surgeon said that there was more risk of scar tissue and there was a slight risk of a pacemaker being needed. He didn't need a pacemaker and he is doing fantastic althow he is only 10 and children seem to recover quicker. Wishing you the best of luck, hope all goes well with the TEE.

 

[ALCapshaw2]

If you are interested in a Mechanical Valve, I recommend looking over the On-X websites, www.onxvalves.com and www.heartvalvechoice.com for the details on the technological advances offered by their relatively new valves (introduced to the World Market in 1996).

For Longevity, the St. Jude Master's Series holds the record at 30 years and counting.

When the day comes that I need a new valve, On-X is my First Choice with the St. Jude Masters Series as a backup.

 

[Richard]

Thanks

Thanks

As I said I havent checked this site for some years, at the time of my first surgery I spoke to people a lot and found it very useful, I guess I wanted to move on and forget about it after that but it is amazing that the site is still there and people respond so quickly and in a positve way. We are expecting our second child in a few weeks and it is weird mix of emotions but mostly good, if I have to have the surgery again then that is life and will all be fine and couldnt be better reason to get better quickly!

 

[SteveInFlorida]

Hi Richard!

I also disappeared from VR.cmo pretty much in the years after my first surgery, but then came back to find VR.com better than ever for my second go around.

I'm 57 and still chose to go with a mechanical (an On-X, as Al recommends) for my second surgery because I couldn't imagine doing this more than twice, and I'm glad I did so far. I'm on Coumadin for over two months now and managing fine.

I was bummed that my first replacement valve, a tissue one, didn't last longer. So, I put off having the second surgery probably 6 months longer than I should have. But, it's important to be ready for it and to have truly reconciled your 'grief' over the failure of the first one, so I think you have to balance those two considerations.

It's a personal decision, though, when you redo and with what type of valve, and so I wish you all the best and look forward to hearing more from you about your journey.

 

[Mary]

Thanks for that. Dont think it will be 2 valves but just the AV, the mitral valve is being restricted but they dont think it is damaged. Can I ask why you say tissue if just the one but mechanical if 2?

I was thinking maybe the pulmonary and aortic valve since you had the Ross. If the pulmonary is still in good shape then I might be tempted to try for a tissue in the aortic position again. The Edwards 3000 bovine valve has a better track record for longevity than its previous counterpart.
If I were facing the possibility of replacing both the pulmonary and aortic, I'd go mechanical.

I don't know if that's logical, but that's my reasoning!

 

[MNmom]

Hi Richard,
I had a tissue valve for 10 years and then a mechanical (two months ago). As I just stated in a similar thread on this forum, the weight has been lifted, as I know that I am done with surgeries! In my case, my second surgery left me with a total heart block, needing a pacemaker, and I was told by my cardiologist that is a normal occurance when dealing with scar tissue.
It was also scarier going into this surgery because of my children that I did not have the first time around. But they all made it through with me, and life is back to normal and then some!
Best of luck, keep us posted!
Ingrid

 

[WayneGM]

Sorry to hear you are facing the mountain again. Best wishes and good luck.

 

[SHEEPDOG]

Welcome Back!

Welcome Back!

Sounds like a song for a 70's TV show. Well,Sorry to hear you are back for these reasons but I know you are glad this site is still here. I found it 5-6 weeks pre op and LOVE it.
If you DONT want another surgery, you pretty much MUST go Mech. I'm guessing you are ABOUT my age (43) and although I wouldn't say my surgery was the WORST thing that I have ever been through, I wouldn't WANT to do it again. AND THERE IS N WAY I WOULD DO IT 3 TIMES!!! I wouldn't BEGIN to try to make the decision for you, just giving my opinion.
I chose the ON-X valve and I am expecting GREAT things out of it. I have a DR recommended INR of 2.0-2.5 and HOPE this will be reduced after ON-X is done with their study of LOWER Coumadin Levels.
Good luck! and let loose with the questions!

 

[Scooby06]

Pulmonic replacement with a mechanical valve is very rare...

A majority are replaced with homografts, or tissue valves. Additionally, this will allow for transcatheter approaches on the pulmonic if the valve should fail early.

 

[Mary]

Pulmonic replacement with a mechanical valve is very rare...

A majority are replaced with homografts, or tissue valves. Additionally, this will allow for transcatheter approaches on the pulmonic if the valve should fail early.

Excellent point.

 

[Richard]

Thanks everyone for all the really useful comments and thoughts. I go for my TEE on 28th August although my doctor has said this to establish how long it can wait rather than if it needs doing, I am hoping it can wait until December, easy at work, I work for an investment bank and am up for promotion to Managing Director this year and whilst I know only work it is something I have worked so hard for I dont want to loose the chance.

On that note my work involves a lot of flying, I cant remember last time how long it is before you can fly after surgery or indeed how long I will be off work, I seem to recall 3 mths?

Thanks again

Richard

 

[Faye]

Hi! I had my surgery last September, spent the better part ot a month in ICU and had a bit of a rocky recovery but I went back to worK about 8 weeks post surgery - working short days to start. About 6 weeks later I was up to full time and back to flying - back to back to back trips. It was tiriing and I would recommend taking it a little slower as you ease back into your travel routine.

The only physical thing I noticed during the flights is a heightened awareness of my heart beat upon landing....oh, and lifting my luggage off the carosel the first time tugged a little on the sternum...

Good Luck on your journey - soon you'll be back living life to it's fullest !!

 

[Richard]

Toe

Toe

Hi



well I had my TOE/TEE Thursday, appears whilst needs doing isnt too urgent so I can try and scedhule around the new baby( due any day!) and work, looking at early December. He wants me to go for an angiogram and treadmill test over next few weeks also. He did say there was some narrowing of the pulmanary vavle, does anyone know if this is common with the Ross proecedure and anything to worry about? my temptation is to get them to replace the pulmonary at the same time and hopefully reduce the risk of any further surgery in the future? doctor did say the op maybe could wait 12mths maybe even 2 years but not sure I want to go through all this again, tests etc in at that point and the symptons are a pain, breathlessness I can handle but I am always so tired nowadays and with new baby and very demanding work scedhule not sure I can live with that for much longer, is this tiredness something others had pre-surgery, the doctors seem unsure this is a related symptom?

Thanks

 

[Ross]

Thanks everyone for all the really useful comments and thoughts. I go for my TEE on 28th August although my doctor has said this to establish how long it can wait rather than if it needs doing, I am hoping it can wait until December, easy at work, I work for an investment bank and am up for promotion to Managing Director this year and whilst I know only work it is something I have worked so hard for I dont want to loose the chance.

On that note my work involves a lot of flying, I cant remember last time how long it is before you can fly after surgery or indeed how long I will be off work, I seem to recall 3 mths?

Thanks again

Richard

You can fly immediately after surgery though your definately going to need help getting around. Recovery 6 months to a year. Depending on your job, you may be able to handle it at 3 months.

 

[Superbob]

You can fly immediately after surgery though your definately going to need help getting around. Recovery 6 months to a year. Depending on your job, you may be able to handle it at 3 months.

It's my understanding that flying will be okay, but in a huge airport with long distances to trek between flights, you might need to get a disabled note from your doctor and get wheelchair assistance for a while. We have found that most airlines are good about providing that; my wife needs such assistance.

That's until you've rebuild your stamina and can walk longer distances on your own comfortably.