Difficulty choosing the right valve for me.

[dick0236]

1. The Ross lasts 20 years plus in 80% of cases, only 10% less than mech valves.
.

??? Interesting comment. My experience is that mech valves last far longer than +/-22 years. In fact, my cardiologist told me a year ago that......"these old valves last forever".

Clarification: After re-reading Patsman07 post, I think I misread it. It may be true that 80% of Ross last 20 years plus and 90% of mechanical last 20 years plus and if you are willing to accept a 20 year fix , either choice would seem OK.....I thought a twenty year survival would be GREAT prior to my surgery. Now that I have gone well beyond that, I'm hoping for 50++ years.

 

[Ryan CA]

Hi Arne,

It sounds like I have a watch around my neck. A ticking sound. When I was still in the hospital, there were a few times in the bathroom where I actually thought the faucet was leaking...I would turn to look at the faucet and then realize, "Oh ya...its my valve."

As for people around me, they can't hear it unless then they put their ear on my chest. I will ask my wife when we are laying in bed, "You sure you cant hear this thing?" She always answers that she can't.

I have become accustomed to it now and most times, I don't really notice it unless I concentrate on it.

Ryan

 

[Patsman07]

Hi

well, that's quite likely, I did however say what it seems to me to be like. This is just my opinion, I could be totally wrong.



this is a bit confusing, what do you mean that it lasts only 10% less?

Also, be careful that you do not confuse the longevity in elderly patients with younger patients. It makes a big difference how old you are when you have it. My homograft lasted me 20 years, but had I been 5 years younger when I got it the stats are that it would not have lasted as long.

Much of this is patient dependent and so projecting performance and durability with tissue valves is fraught.

I respect that each has their own opinions and I will not tell anyone about their choice or choices. Please do not confuse my willingness to argue the data with how I feel about any persons choice or their reasons.



PS: Firstly I'm not an expert (who here *is*) ... but from this study

http://circ.ahajournals.org/content/123/1/31.long
Survival Comparison of the Ross Procedure and Mechanical Valve Replacement With Optimal Self-Management Anticoagulation Therapy
Propensity-Matched Cohort Study


so, short follow up times ...



So, 10 years and all good. My view is that were we to look at follow up of 30 years I am sure you'll find it quite hard to find the people in the Ross group, but you will find people in the Mechanical group.

Perhaps some people here will not be considering life in 30 years time, but as a 30year old I sure would.

Of course were all entitled to our view, and your right, if you want to minimise the chances to a re-op mechanical is the way to go.
90% of mechanical valvers, according to what I have read, will not need another operation.
80% of ross patients are free from reoperation after 20 years. From what I can gather, we dont know about the Ross data post 20years because it only became popular just over 20 years ago. Although as my surgeon told me, if it lasts 20years you can be fairly sure it will last your lifetime.

I totally understand where your coming from Pecille, I read your posts re your complications and if I had been through that I would be advising people to go mechanical.

Such a pity there is no perfect solution. Im sure medical science will eventually come up witha silent, durable valve that wont require warfarin. Unfortunately it will be too late for us!

 

[neil]

welcome arne , Good advice already given and good luck with your choice, one thing to remember its your choice and its only opinions given on here, some can be blinkered in there advice, listen carefully what your doctors and cardio tell you as they are the experts, good luck mate

 

[pellicle]

Hi Patsman

thanks for your reasoned response. I just wanted to clarify where I come from and that my view is absolutely not "one size fits all". Despite what I have been through I do not unilaterally advocate mechanical. If the question comes from somone in their mid 60's my answer will be different to when a question comes from some one in their early 30's. This is something which it seems to me that people miss. As well people seem to forget that surgery for a late 20's to mid 40' person is quite a different kettle of fish because their metabolisms are different to that of a person in their mid sixties and over. This is well recognised and well documented even if the exact mechanism of action is as yet uncertain.

Lastly on the matter of opinions I think it would be clearer if people said "I think" or "In my understanding" or something like that rather than make statements, such are easily mistaken for fact. There are some facts stated here so making opinion clearer from known fact is a good thing. I try my best to say things this way.

Although as my surgeon told me, if it lasts 20years you can be fairly sure it will last your lifetime.

those are interesting stats, and encouraging. But what must also be considered is that if you have the Ross at 30 and it doesn't last 20 years (but lasts less than 15). Even on this site you can read of a number of Ross procedures which did not last the recipient anywhere near as long as that. Statistically (if your figures are correct) such should not really be the case. Interestingly the majority of cases are among younger patients.

Such a pity there is no perfect solution. Im sure medical science will eventually come up witha silent, durable valve that wont require warfarin. Unfortunately it will be too late for us!

I agree, such would be the Grail.

 

[pellicle]

The OP may not have found this thread

http://www.valvereplacement.org/forums/showthread.php?41998-My-Experience-with-the-Ross-Procedure

 

[TheGymGuy]

Arne,
I will be in Toronto (Markham Area) in 10 days. You can pick my brains in person if that would help. Also, you can listen to the ticking in person if you should be able to hear it.
GymGuy

 

[Arne]

I'm meeting with another surgeon this week to discuss the different option further. All your responses have been great and I feel a lot less stressed about this whole thing than before. It seems I'm still undecided, and tend to jump from one option to another every so often based on my emotions or someone's opinion/experience. I feel like it will quickly become evident which option is best suited for me after my discussion with the surgeons and my cardiologist. Thank you all for the support!

 

[Arne]

TheGymGuy,

Where abouts in Markham? I'm in downtown Toronto.

 

[epstns]

Arne - I'm back after the long weekend. . .

You asked how my valve is doing. As far as I can tell, and as far as my cardio can tell from echo's and from my consultations, I'm doing fine. Probably as fine as I was, say, one year after surgery. I'm almost 3 1/2 years post op, and all is well. I'm in better shape than I've been for some time, feel great, and do about all that I want to do (at least as far as the valve is concerned - some limitations with pacemaker). My surgeon and cardio told me that with the CE valve, I will always have a mild murmur, but that it should remain stable at that level. I'm at the gym 5 days a week, and some of the younger guys have trouble keeping up with me. If my knees weren't so shot, I'd be back to running, too.

As pellicle (I think) and I have said, there are no "bad" choices here. Some may be better for you than others, but any of them will get you back to health and allow you to get on with your life. At my age, I chose the tissue valve. Had I been considerably younger, my choice might have been different. The best advice I can give you is to consider all the facts, make your choice, and don't look back. Once all of your decisions are made, your stress level will drop dramatically.

 

[joey66]

Arne

I went through the exact same decision process as you in 2012. I went On-X mechanical valve primarily because I didn't want another surgery in 15 years (or less). It is impossible to say how long the tissue valve will last. The data is pretty wide. It is a very personal choice and I think as it has been said you have to make the choice that has the risks that you consider lowest or least worrisome and then don't look back. My valve can only be heard by me when things are quiet. My wife can hear it in a completely quiet room when she is laying next to me and my son who apparently has amazing hearing can hear it in a quite room when standing next to me. As for warfarin therapy, I haven't had any issues. My dose stabilized in the first couple months and I do home monitoring (I would insist on this if you end up with a mechanical). I would also point out that if you go mechanical the On-X is the only valve that may give you the future option to reduce or eliminate blood thinner. They are running trial to study this and have approval to reduce the recommended INR target in Europe already. This reduces bleeding risk without increasing the clotting risk. Anyway, I wish the very best of luck with this. It can be very difficult at times to take all this in. I would highly recommend exercising as much as you are allowed prior to surgery. I was in pretty good shape going in and my surgery and recovery went amazingly well.

Joe

 

[Arne]

I think I've decided on getting the On-X. Do I have to contact the company to inform them of my request for this valve?

 

[pellicle]

I think I've decided on getting the On-X. Do I have to contact the company to inform them of my request for this valve?

the surgeon does this as they are in stock at the hospital. Noone would feel comfortable with you handling it.

FWIW on my surgery I said to my surgeon that I preferred a On-X and he noted that. We also discussed that he would make his choice when he saw what he saw. When he had me open and was doing it he chose to use the ATS (now Medtronics valve) because he preferred the fact that it already had the Aortic Graft attached (saving time, and the On-X graft attached had not at that stage completed its approval by the Australian medical authorities) and prefers working with the stitching ring because he finds its faster. Less time on pump is better.

I deferred to his judgment. I'd put up a blog post with my discoveries and preference earlier to this but of course that was more for me and my friends than anything to do with him.

Also (FWIW) there is little actual difference in construction between the On-X and the ATS (or even the St Jude really) and what areas one has as a +ve the other valve has +ve's in other areas. For instance the ATS valve has lower pressures created during valve closing (meaning it will be less likely to trigger platelet activation levels thus minimising clot formation) while the On-X has lower pressures on opening (or that could be the other way round).

A nice touch (for me) was that ATS gave me (yes, for free) a Roche Coaguchek XS (which meant that took the hassle out of deciding which INR monitor I'd get).

Anyway, what I'm saying is that it really doesn't make a big difference which ever valve you get.

Best Wishes with your upcoming surgery and if you are on Skype feel free to PM me and I can make time to chat to you while you're stuck in the ward after ICU.

 

[Leah]

I was also supposed to get the On-x, but my surgeon had a problem with it fitting so I ended up with the ATS. I was also supposed to get the minimally invasive surgery, but my valve was in worse shape than they thought so that didn't work out either. I don't care, though. I am a very happy camper. The ATS is really quiet and I am doing great one year later. Good luck, Arne! You will do just fine.

 

[Arne]

So essentially, the surgeon could just say 'yes' to using On-X and when the time comes, just use the valve he already wanted to put in you in the first place? I'm not saying that's what happened with you two, but does that mean I should find a surgeon that is familiar with and willing to install the On-X?

 

[joey66]

Arne - I do recommend that you look for a surgeon who uses the valve. You can contact the company and tell them where you are and they can tell you who their customers are. If you message me I can provide you a contact person. I don't work for the company but I did a lot of research prior to my decision so I could connect you with someone. I think it is important to assure that the hospital has stock of the possible sizes you might need. I do think the valves of different companies are similar in many ways, and all of them have to have had rigorous clinical testing to be approved. Having said that, the On-X valve has some unique features. The hinge design allows the valve leaflets to open to a full 90 degrees. No other valve does this. I think St Jude is next best at around 85 degrees. This full opening reduces eddy currents around the leaflets which reduces clotting. Also, the On-X valve carbon coating process is unique to them. They are the only company that has zero machining of the carbon surface. Every angle and corner is smooth and rounded, which is in contrast to machined 90 degree angles on other valves. These are internal angles that are slightly rougher and can cause some of damage to some blood cells which doesn't happen on the On-X valve. Like many things in the medical device business different doctors have different products they favor and this is very key. Your surgeon has to be comfortable with the product. Valve sizing and placement are very tactical surgeon skill oriented and you want the surgeon to be comfortable with what they are doing. So bottom line - there are some very clear differences with On-X, in my opinion, and I think the clinical data supports those differences - but going with a valve your surgeon is comfortable with is a huge key. So, like I said, message me if you want a contact and whichever valve you get - you will be fine. These docs and hospital teams are very skilled.

 

[pellicle]

So essentially, the surgeon could just say 'yes' to using On-X and when the time comes, just use the valve he already wanted to put in you in the first place? I'm not saying that's what happened with you two, but does that mean I should find a surgeon that is familiar with and willing to install the On-X?

I guess it depends if the valve choice you have made (knowing not a fraction of what your surgeon knows) matters to you more than selecting a surgeon who you really like and trust. Lots more can go wrong in a surgery than picking which brand of valve.

But if the On-X matters more than the other things then you could insist on it then pick a surgeon based on that.

In my case I made it clear to the surgeon that first I trusted him and second I leaned towards the ATS. At that time I had almost no knowledge of the ATS. As it happens I think I got the best outcome

PS

Knew this was around here somewhere

http://www.valvereplacement.org/for...On-X-vs-ATS-open-pivot-The-Truth-is-Out-There

Personally I rate myself as not really knowing much about the subject. I am not trying to tell you what to do, only input things as in see them in responce to your questions.

Best Wishes

 

[sood]

Hi,

I had surgery last year at 35. Thought very briefly about tissue due to future minimally invasive replacements. Discussed with surgeon and decided that there is no guarantees and no data regarding minimally invasive options. I went with the on-x valve and don't regret it. Coumadin is tricky but besides my inr fluctuating I haven't had any adverse problems beyond the fact that I'm somehow really allergic to spinach now.

 

[joey66]

Hi,

I had surgery last year at 35. Thought very briefly about tissue due to future minimally invasive replacements. Discussed with surgeon and decided that there is no guarantees and no data regarding minimally invasive options. I went with the on-x valve and don't regret it. Coumadin is tricky but besides my inr fluctuating I haven't had any adverse problems beyond the fact that I'm somehow really allergic to spinach now.

Ha! Yeah, I almost wish I was on Coumadin as a kid so I could have had a better excuse not to eat my green veggies!.....

 

[bw00]

Hi! I might be a little late with my message but I thought I would just share my experience. I just had the Ross procedure done in April. The Ross procedure is not opted unless the doctors are sure you are a good option. Since I am an 18 year old girl, a mechanical valve was not a good idea because of the medication, and I thought it was not worth it to get a tissue valve and have to go into surgery again within ten years. Also the normal size valves did not fit me. I think for me the ross procedure was the perfect solution, I will be able to live without limitations for hopefully at least 20 years. Hopefully by then the medical developments have furthered, so they won't need to open my chest again. My surgeon was a specialist in Ross procedures, the experience a surgeon has with this particular procedure is very important. Obviously the procedure is a bit more risky, but you can get complications with the other surgeries as well. If you have an experienced surgeon, I wouldn't worry about it too much. I hope it was useful and sorry about any English mistakes, its not my first language. Good luck with everything!
Berit