For reops: are you glad you started with tissue?

[pem]

I had surgery in Jan 2011- with the ATS valve and I find out two weeks ago that my valve is leaking "real bad"- Waiting for surgeon to call after he reviews my last films and reports. I am pretty disgusted and depressed- but Did I make the wrong decision ? - NO there are no perfect decisions- and I must move forward.

Wow - that's a bummer! Any idea why it's leaking? Is it leaking around the valve or through the valve?

Will be thinking of you and hoping for good resolutions. Please keeps us posted.

-Pem (fellow ATSer)

 

[JUST-WAITING]

IT is leaking around valve - not through valve - we are waiting for the surgeon to call- that is the worst part.

 

[Jkm7]

How miserable the surgeon is taking his sweet time. He has to know the stress this is causing. Hope you are right now on the phone with him.

 

[Penny]

Just-waiting,
Scary news for sure. I hope that by now your surgeon has contacted you. Best wishes for the long road ahead. Remember we are all here to support you with this. Positive thoughts! Take care!

 

[djteako]

Pem, glad you've made your decision.
Not that it matters now, but I have often wondered if people who started with mechanical valves, and then needed a re-op for whatever reason, wished they had gone with a tissue the first time around.

I'd love to add my opinion here . I had my first OHS when I was 9 , for a valve repair . Then an AVR when I was 14 . I am now just about 40 , and 3 weeks away from having my 25 year old mechanical valve replaced .

Due to the age in which I had my valve replaced (14) I wish I had gone with a tissue valve the first time . The only reason is , I have had many complications with dental proceedures , mainly wisdom teeth removal , and it is all due to anti-coagulants . Being on anti-coagulants with a MHV makes a simple 1 day or less proceedure , into a 2 week plus ordeal !!!!!
I don't regret my choice of a MHV , and am very excited to relace my antique bjiork-shilley with a new ON-X .

 

[neil]

why have you the need to replace your mech valve? i have heard from a few people who need re ops with mech valves,it again proves that no valve is guaranteed to last a lifetime,

 

[djteako]

oddly enough , even being the valve of the 90's scare (bjiork shilley valves were re-called and pulled off the market due to sudden catastrophic failure due to strut breakage) , there is not a thing wrong with my valve . it is fully functional and free of clotting and panus growth . The problem is , it is a 21 mm , which was the perfect size for me when I was 14 . Now that I am full grown , I need at least a 25 mm , if not a 27 mm .
I was supposed to have the valve replaced 15 years ago , as the surgeon that installed it said I would outgrow it within 10 years , but back in the 90's they were still very afraid to do a 3rd operation , unless absolutely nessecary (I too seem to be a big scar tissue factory)
It has now become time , as the valve is too small , and they will be doing my aortic root as well , as it is at 47mm , and they think I might have a small anyurism right at the valve

 

[Penny]

I'm just curious. Has anybody on this forum had their tissue valve of any kind last 20 years? I can't remember ever reading this to be true.

I am 45 and opted for the tissue. My uncle has had his tissue valve for 18 years now with no problems that was one of the reasons I chose the tissue valve. I will most likely need surgery again sooner than the average person but that is due to the infection I developed which did some damage to my new valve. My advice... the surgery is not anything I would like to do more than once, had I known I would have gone with the mechanical yet I know there is no guarantees that the mechanical one could fail too. Tough decision but all you can do is research it and make a decision that you feel comfortable with.

 

[Luana]

oddly enough , even being the valve of the 90's scare (bjiork shilley valves were re-called and pulled off the market due to sudden catastrophic failure due to strut breakage) , there is not a thing wrong with my valve . it is fully functional and free of clotting and panus growth . The problem is , it is a 21 mm , which was the perfect size for me when I was 14 . Now that I am full grown , I need at least a 25 mm , if not a 27 mm .
I was supposed to have the valve replaced 15 years ago , as the surgeon that installed it said I would outgrow it within 10 years , but back in the 90's they were still very afraid to do a 3rd operation , unless absolutely nessecary (I too seem to be a big scar tissue factory)
It has now become time , as the valve is too small , and they will be doing my aortic root as well , as it is at 47mm, and they think I might have a small anyurism right at the valve

About the Bjork-Shiley valve, only one model (CC) had problems with the strut welds. Then it was a relatively small percentage of failures almost all incurring two years after implant. Of course, if it happened to you, it would be horrible. We have some members who have over 25 years or more of use with the Bjork-Shiley valves and it still is functioning fine. This seems to be the case with you- the valve is lasting just fine, but it is undersized according to your surgeon and your aortic root is enlarging. I’m a little unclear about your statement “as the surgeon that installed it said I would outgrow it within 10 years.” I’m assuming he said that to you when you were 14 years old. Typically, most hearts are adult or near adult size by then and certainly don’t continue to grow for another ten years or until you were 24. Tissue valve were available 25 years ago, but in children and young adults, the typically don’t last that long. Generally, the more surgeries you have, the more problems with scar tissue and A-fib especially as you age.

Has your surgeon expressed any opinion about if you had gone with a tissue at 14, how many tissue valves do you think you would have gone through by now?

If you check out the ACT Forum - they might be able to help you to have better dental expeience.

Good luck!

 

[djteako]

Luana .
yes it was back when I was 14 that they said I would outgrow it in 10 years . As with most typical pediatric cases , both times after having surgeries , I went through incredible growth spurts , as is normally the case because normal growth is stunted with a poor functioning heart . They actually like to wait until your 16 , to call it a full grown heart , so it was expected to grow some !!! Had I gone with a tissue valve , It would have only been once , until i was full grown . Of course hind sight is 20/20 , and who knew about future dental issues .
I shouldn't need any more "bad" dental experiences , as all my wisdom teeth are gone now !!!!! and the bad experiences were all related to poor doctors not knowing how to properly bridge or manage INR's , or listening to me when I told them what was going to happen , and having them appoligise profusly after for not listening . Just one more good strong point for anyone on coumadin to learn as much as they possibly can , and be prepared to look after yourself !!!!

 

[Luana]

I am 45 and opted for the tissue. My uncle has had his tissue valve for 18 years now with no problems that was one of the reasons I chose the tissue valve. I will most likely need surgery again sooner than the average person but that is due to the infection I developed which did some damage to my new valve. My advice... the surgery is not anything I would like to do more than once, had I known I would have gone with the mechanical yet I know there is no guarantees that the mechanical one could fail too. Tough decision but all you can do is research it and make a decision that you feel comfortable with.

Penny,
If I remember correctly, you have a medical condition that precludes a mechanical valve. Don't remember if it was Chron's or celiac, something that would complicate warfarin absorption so you may not be properly anticoagulated, putting you at high risk for a stroke. In that case, if it were me, I wouldn't even consider a mechanical valve; tissue would be the only logical selection.

 

[Penny]

yes Luana being celiac was a huge concern for me with having to take warfarin. As long as my celiac is under control then the warfarin wouldn't be an issue. One never knows what may happen...if we all could have a crystal ball wouldn't life be easier...

 

[drivetopless]

I can't speak for the tissue valve experience.

But I can tell you after living 7 months with an On-X valve and now doing my home ACT INR testing, ACT monitoring it is not nearly as a complicated as the medical industry would have you believe. Once you are stable you only need to test every couple of weeks. And I eat/drink what ever I want . . .I just eat consistently. My INR is more stable when I eat greens every day. Knowing what I know now, even if the aspirin/plavix becomes an option, I probably won't be the first to switch to that protocol. Warfarin has been around a long time and has saved many lives. It has a good track record, I think. When I am older (30+ years from now)and perhaps have more issues with staying in range, that is when I will switch to the aspirin plavix protocol (assuming it has long term data proven safer than warfarin therapy by then).

ACT does not turn you into a hemophiliac/free bleeder. IT just makes your blood take seconds longer to clot. Assuming you don't have an underlying condition and as long as you are in range, you will be likely be just fine. Even if you get out of range, it is likely a non-event as long as you don't stay there. The only thing I"ve really noticed is that I bruise a little easier.

The mechanical valve can be "loud" but I kinda like it now that I am used to it.

 

[Julian]

I also have an On-X valve. I was thinking if I would've went tissue I could have it replaced in the future very easily, instead of having to crack my chest open again. Unfortunately we don't know what will be the standard for re ops in the future. At my age going tissue would almost certainly guarantee a re op in 5-10 years. If all goes according to plan I may require a re op in 20-50 years maybe never with a mechanical valve. By this time I think the standard will be different to what we are used to now vs 5-10 years from now, in other words more favorable for me. Only time will tell. This is primarily why I chose mechanical. If I was 60+ years old I would of most likely went tissue.

 

[rubywhistle]

One thing is certain.....if you need this surgery, get it done. Whether you decide to go with tissue or mechanical....make your choice and then be at peace with your decision and go on to live your life in better health.

Wow this took a load off! Thanks for that