Very interesting! Thanks. I'll be talking with the ACT rep on Monday and pose the question about protection from pannus growth.
How do you find the clicking of the On-X? Do you notice it?
Thanks again!
pem
PEM,
I'm guessing you meant you will be talking to the ATS rep, not ACT, unless you are lining up who would manage your Coumadin already,
.. Anyway from what I know about pannus or excessive scar tissue, for either tissue OR mechanical valves, first it is relatively rare, but often the problem is pannus that forms at the actual seam where they sew the valves or grafts to your own tissue, that causes stenosis and altho it can be fatal if it grew on or by the leaflets,(by blocking them from opening or closing) my guess is the majority of REDOs are because of pannus at the seams and not blocking leaflets. I THINK as far as I know the ON-X design just guards the leaflets from pannus or scarring, not the seam.
Anything I've read on ATS valves needing REDO for pannus, was it was very rare -actually even the link ON-X gives showing ATS needing replaced for pannus was the article on the FIRST case (1st reported anyway) and I haven't seen anything showing it happened to many people. Granted the oldest ATS valves have only been in patients a year or so longer than when ON-X was first used, I BELIEVE with out looking everything up right now, some where around the early -mid 90s, so who knows if it is a gradual thing- if more cases will be showing up in the near future. BUT IF I personally were leaning toward a ATS valve, I don't think I would worry too much about if another valve has a barrier to the leaflets and ATS doesn't, since odds are pretty high against pannus forming to start with and even better in ATS as far as I can tell without spending days reading studies. At least i probably wouldn't let my mind be changed because of fear of pannus, if there are other reasons you think the ATS is better for you.
Altho I thought something about the concave of the design helped also, but that probably was more of a help in keeping clots from forming on the leaflets...Which is the other main reason mech valves need replaced, beside BE. Altho IF clots are forming on a mech valvs leaflets, they often form relatively quickly without notice (unlike pannus formation, that you can keep an eye on with yearly check ups) so many patients don't make it to surgery so wouldn't be counted as REDOs.
Justin has been thru many surgeries and intervention and like Norma said "Luckily what happened to me, doesn't happen to many, so don't spend time fretting about "what might happen". I really believe you can make the best choices for yourself ( Altho IMO the MOST important decision is the surgeon and center where you will have the surgery) and hope for the best, but really don't worry about or drive yourself nuts with all the different "what if's" that might happen.
Odd are VERY good anyone will have a very succesful surgery and recovery for the most part, especially if you go into it relatively healthy, with no other serious medical problems like lung issues etc. With experienced surgeons and centers, first time REDOs have the same odds. Several studies have shown in the larger CHD center where the surgeons do REDOs and multiple REDOs weekly if no daily, even the 3rd and 4th have great results, altho I doubt someone in their 40s getting their first OHS NOW would need a 3rd or 4th OHS.
Just like odds are you could live decades w/ a mech valve and anticoagulants and not have any Major clots or bleeds.
Even IF you have a terrible time of it, most likely, you will end up better than you would with out the surgery, it may take longer than anyone wants but the vast majority even with terrible complications, or other major health problems going INTO surgery go on to live very good active lives. The same with any problems you could have from having a mech valve and coumadin or other anticoagulant, chances are good after recovery you'd have a long happy life.
Justin had some terrible complications from surgeries AND even from Caths. -He was in and out (mostly in) of the hospital for 6 months after his surgery at 18 months (over 20 years ago when they didn't know as much about treating some things), it was a very complex surgery (they pretty much rebuilt his heart & rerouted his blood) on and off the vent etc, with pericardial fluid, then caught RSV. then after his 5th OHS he had a massive infection that anything i googled started with high mortality rate, after anothr big surgery and muscle flap to hold his sternum together, he had a longer recovery, but is doing great. He also had minor bumps,but for the most part he was home earlier (less than a week) for his 3rd, 4th and 5th OHS than his first 2 so it just as many say each person experience is different and even each surgery for 1 person can be different -the more OHS doesn't necessarily mean each one will be worse. I know hundreds of kids/adults that have had 3 or more -very complex surgeries and are doing great. Sadly we all know people who didn't survive their first.
My Mom also had terrible complication's from both caths and OHS, being trached and months in rehab so I know first hand how bad surgery or even caths can be.
Also why we don't count on anything, was he also is "unlucky" or "lucky" depending how you look at it, He got BE when he was 11 from losing a baby molar but had a complete recovery with just antibiotics, he had to have a mulfunctioning pacemaker removed, luckily he wasn't using it at the time so didn't have to get a new one (the first was in his abdomin under his ribs, if he got another it would have been another incision since they would have put it in the shoulder area.
He is a "scar building machine" according to his surgeon who is one of the worlds top CHD surgeons so his last 2 OHS we knew going in his heart was fused to his sternum, making it risky to open him, but he also tends to build tissue. He got a tissu valve w/ 2 dacron conduits in 05 less than a year later he had severe pulmonary stenosis, we were sad since we hoped the tissue valve would last at leest 10 years (on right side) we actually talked about having it replaced by cath as part of the Melody trials, but they couldn't get a good look during the echo or MRI, but when he had the cath it turned out the tissue valve was perfect, the dacron conduit that 'should" have lasted a lifetime needed replaced. They ended up replacing that section of dacron, but the valve looked perfect so they left that and the other section of dacron..
We couldn't believe the part that didn't last 2 years was the part that should have lasted decades or the rest of his life, but things happen.
I'm not trying to change your mind I think you will be very happy with your mechanical valve since you've put alot of thought into it.
so i didn't ask earlier, but since there is alot of discussion on various valves in your thread, I was wonderring when you said
"One surgeon believes that the newer "3rd generation" tissue valves will last 20-25 years or even longer(!) However he is extrapolating and the data doesn't yet exist to support or refute that. The other surgeon (both are world class) is more cautious about projecting with regard to the newer tissue valves.
I would suspect that the 3rd gen valve will perform better than the 2nd gen, but who knows if they will truly approach the longevity of mech valves. Based on my reading, it looks like tissue valves simply don't last as long in people under 60. I'm 41, so I put myself in the category of a shorter tissue valve lifespan - even with the newer valves, I think I'd be lucky to get 15 years. Which isn't bad. But I'm 41, so 41+15+15+15 get's me to 70"
Which tissue valves were you talking about? Sometimes, time goes so fast, people, even docotrs might not think valves have been around as long as they have, for example the valves most used today, Perimount , Biocore and Hanncock II were first used in the earlier 80s so I a NOT sayng any people have had one that long just that they have about 30 years worth of data on them. There was a long thread in the last year or so where we were figuring out when different tissue and mech valves were first implanted in people. So we could see what valve had REAL tract records of being around 20-25 years and which valves HOPED to last long or lifetime but haven't been in use long enough to have 20 year records.
Another thing I found interesting talking to various doctors, (not from studies just thoughts and opinions) usually in the middle of the night when Justin was in the hospital almost a month in 07 and I couldn't sleep, is that last time I had alot of discussion about it), is many believe the tissue valve 'longevity" in someone, is probably related to how active the bone growth/healing is.
For example in really young kids who are still growing and their body chemistry for growing bones is very strong they calcify tissue valves /grafts quickly. As you get older it takes people longer to heal broken bones, chances are if someone in the late 20s broke their bones it would heal much faster than someone in their 60s 0r 70s. The same chemsitry is probably related to how long or short a tissue valve would PROBABLY last in that age group. Also when people start getting to the age were their bone density becomes less, like women after menopause etc..tissue valves last longer.
Of course that could be completely wrong, but it made sense to me.
Seriously, what else are they coating those valves with 
