My doc wants me to get the Carbometrics but I like the On-X

[DavidC]

I like what I've read about the On-x valve but don't know if anyone has it in and working. Any thoughts?

 

[gijanet]

Could it be Carbomedics??

Could it be Carbomedics??

Hi, David. I recently posted a similar question about the Carbomedics valve. My daughter's surgeon prefers a carbomedics valve and I wanted to find out why as I, too, have been hearing lots of good things about the On-X. Apparently, ON-x is an offshoot of Carbomedics. My post is on the "Heart Forum" about two-thirds of the way down the page of current threads. It is entitled "Need help with researching........" I'll let you see if you can make heads or tails of it as I am still sorting through it myself. I know that time is of the essence for you, whereas we, hopefully, have another three months or so. BTW, Medtronic has a carbomedics valve and is very happy with it and says that it is one of the quietest. And supposedly the Cleveland Clinic swears by them. Good luck in your research, and, if you find anything enlightening, please feel free to send it my way.

Please keep us posted as to your progress as your "family" will be worrying.
Hugs.

 

[gijanet]

P.s.

P.s.

If you go back a ways in the "valve selection" forum, Emma posted a thread on the On-X. Her four year old daughter has one and they are pleased with it. Take care. J.

 

[Bionic Valve Tim]

I had an ON-X aortic valve implanted 10 weeks ago. Obviously, it's too short a time for me to make any meaningful generalizations--and I also have no other valves to which I can compare it!

I'm here and ticking away, so I'm thrilled with the ON-X In my case, I "researched" it (researched in quotes because it was far from exhaustive!) and wanted to ask my surgeaon about it when I met him for the first time. I never got the chance to ask, because he quickly announced that ON-X is always his first choice. For me, that was enough because I trust my surgeon implicitly.

Honestly, I felt sort of silly in retrospect. I did some minor research and went in hoping to ask informed questions, but it's not like I had learned enough to insist on a certain model. What the hell do I know about heart valves?

Anyway, so far, so good.

My only caution is that their website (http://www.onxvalves.com/) makes a big deal about the aspirin-only trials. I wouldn't think about that when you make your valve decision. You don't want to pick ON-X just for that only to find out later that aspirin-only anticoagulation is not safe and will never get approved.

 

[Ross]

All I want to know is when are they going to make a model with a graft sleeve attached?

 

[Moo]

On-X Valve

On-X Valve

I just had a 23mm On-X valve implanted 3 weeks ago after my cow valve went south after 6 years. I had it done at columbia university in NYC by Dr. Naka (Had the 1st done there by Dr. Rose). I had the Carbomedics one all picked out (not knowing about the on-x) and he immediately said he would use the on-x because it has superior flow, has greater INR tolerance (Still recommends 2.5-3.5 even though it can go down to 1.5 without worry), and has the promise of asprin only therapy. I can feel the difference in flow between the tissue valve (25mm) and the On-X (23mm), the latter being much better. Although the clicking can get annoying sometimes, and the coumadin has its risks, i would recommend the On-X over a tissue valve if your over 21 years old.

 

[thecman321]

mech valve choices

mech valve choices

I think there may be regional preferences by surgeons regarding specific mech valve choices.
Two top surgeons here in the north east that i have spoken with unanimously choose the St. Jude? i guess we are more conservative in these here parts and it has a longer track record. Either that or a rep from on-x hasnt made it to this part of the country yet.

 

[tobagotwo]

Moo?

Moo?

I used to live in Middlesex. On Runyon Ave, right behind what is now a Dunkin Donuts in the Dunellen end of town. Middlesex has the best town services in NJ. I'm in Bridgewater, now.

David, I think Dirk pointed out some inequity in the named aperture sizes of the On-X valves a while ago, but they do seem to do very well hemodynamically, ostensibly lower in clot potential, and low in blood damage. If I were getting a fancy piece of moving carbon sculpture for my heart, the On-X would certainly be a top contender.

I would ask your surgeon if he'll consider installing the On-X. If he says he prefers the other, then ask him if he knows a surgeon who will put an On-X in. That might change his mind right there.

It's your heart, and your future. If there's nothing specific countervening, he has no reason I can conceive of not to agree to use the On-X, which is a fully approved valve.

I would definitely go for it, if it were me. After all, you don't get to wait a year or so until the On-X gets more popular...

Best wishes,

 

[tnboomer1013]

Hi dave

Hi dave

In '01 I had a 31 mm carbomedics implanted and it can be the loudest thing sometimes. While riding in a car my friend heard it from 5 ft away. Good luck with your choice.

 

[Bionic Valve Tim]

In '01 I had a 31 mm carbomedics implanted and it can be the loudest thing sometimes. While riding in a car my friend heard it from 5 ft away. Good luck with your choice.

Just a quick note: I thought/hoped the ON-X would be pretty quiet, being a new design and all, but it's definitely noticeable to others. I have no idea how loud other designs are, but my students at school claim to hear it up to about 10-12 feet away when the room is dead silent.

Again, I have no idea how that compares to other valves, but the kids definitely get a kick out of it. The noise really bothered me post-op, especially at night when I tried to sleep or at times when I felt down about the surgery/situation, but I guess my brain is better at tuning it out now. I haven't had to go buy a white-noise machine or anything...

Please keep us posted with your choice.

BTW, how many ON-X'ers are there at vr.com?

 

[Marty]

The surgeons at Inova Fairfax still all St. Jude. I love my St.Jude. Can't hear it at all any more. Since my "bleed" I've been keeping my INR near 2.5 rather than 3.5 ( I test weekly with Coaguchek). So far so good. My leg is almost back to normal after one month post bleed.

 

[Dirk]

Well some ideas/ results from my research:

First: All bileaflet valves are quite similiar.
A bigger difference is the choice of a tilting disc valve (Medtronic Hall)
The latter one produces much less HITS (microembolies, bubbles , from which some think they could damage the brain) if implanted correctly but which is much more noisy.
All other bileaflet valve produce much more HITS, but from the bileaflet ones, the ATS valve produces the lowest amount.

The ATS valve seems to be also the most quiet one.
http://www.carbomedics.com/patients_how_ticking.asp
Also reports from patients back up that the ATS one is the most quiet one.

For the ATS valve as well as for the SJM valve there are studies available showing that they are still safe with a lower INR.

On surgeon said to me that the superior haemodynamics of the ON-X is only theoretical, because it needs more volume to be implanted compared to say a SJM valve. Hence for the ON-X a lower size has to be taken compared to the other valves. Taking this into account, the benefit of the ON-X is lost.

The Carbonmedics is said to have a higher risk of thrombus formation if implanted in mitral position. So why taking this valve even for the arotic position? However, there is no prove that it is inferior in aortic position.

Taking this all into account my --- only personal --- choice would be never to take the Carbomedics and to prefer the ATS if I had to decide for a mechanical one.
However, due to the HITS problem, I do prefer in the moment a biological valve.

Greetings

Dirk

 

[gijanet]

Dirk, I would be very interested..........

Dirk, I would be very interested..........

The Carbonmedics is said to have a higher risk of thrombus formation if implanted in mitral position. Dirk

in knowing where you got this information and what you are basing this on?

My daughter just turned four; within the next few months she will be undergoing a valve replacement for her common AV valve (her mitral and tricuspid are merged as part of her complete AVSD and DORV). Her surgeon prefers the carbomedics valve. I have been trying to do some research on mechanical valves, particularly the carbomedics and On-X, but have found much of it is over my non-science oriented head.

You appear to have done a lot of research. Could you please share where you got this bit of information? THanks so much. J.

 

[Dirk]

Gijanet,

I must admit that there are no clear data on the on the incidences of thromboembolisms with different valve types. All studies came to similiar risks.

However, the same surgeon who said to me that he doubts the haemodynamical superiority of the On-X valve because of its larger volume which leads to an implantation of a smaller nominal size compared to another brand, said, that he had to explant several times Carbomedics valves which got thrombosis in the mitral postion but no one from the other brands.However, this is not a real scientific statement, and it is not backed up by statistics.

However, I just found this link: It states: " There were no significant differences in the performance of the three valves in the aortic position. In the mitral position the linearized rate of valve thrombosis was significantly higher in the Carbomedics group"

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=pubmed&dopt=Abstract&list_uids=15383051



Greetings

Dirk

 

[gijanet]

Dirk, I need help deciphering........

Dirk, I need help deciphering........

the following:

However, the same surgeon who said to me that he doubts the haemodynamical superiority of the On-X valve because of its larger volume which leads to an implantation of a smaller nominal size compared to another brand

Can you put this in simpler terms for me? What is this really saying: its larger volume which leads to an implantation of a smaller nominal size ? of what? the valve? why would this make a difference in the hemodynamics (sp)?

What larger volume and what does it mean by smaller nominal size?

I also pulled up the link. The abstract was interesting. I wonder what they mean by the aortic and mitral group? Did they implant two valves or did these individuals have common AV valves like Katie's? I would consider hers mitral and tricuspid - yet it IS referred to as her common AV valve. Just wondering. It would be nice to know that there are others out there who have a common AV valve and someone has researched this "stuff" on it for complications. And I know this was just one study...............

Anyway, thanks again for the info and help. It truly is appreciated.

 

[Moo]

Example... ME

Example... ME

Case-in-point:

I had a 25mm Cow valve, then a 23mm On-X. The On-X is better (flow-wise or volume-wise) than both the Original and the Cow Valve even though it is 2mm smaller (nominal-size wise).

Surgeons are often trained to implant the largest (esp aortic) valve replacement valve size possible for a given aorta to provide the patient maximum hemodynamics and provide optimal regression of LVMI (left ventricular mass index) and hypertrophy caused by the overloaded heart working too hard to pump blood through a restricted AV or MV.

Plus the second sugeon said it was a *bitch* to get the 25mm out (more time than to put in the new valve) because it was so crammed into the root.

Hope this helps,

Rich

 

[RCB]

Interesting!

Interesting!

Case-in-point:

I had a 25mm Cow valve, then a 23mm On-X.

Rich

Rich, you are very interesting case.

Can you remember what was the original thinking of your drs. on why you received a tissue valve at your age, why it was explanted so soon and why the decision to go mech? Also what is your target INR and how are you getting along with the testing? Was a figure of 30 years for replacement of the mech. valve ever mentioned to you?
I am sorry for all the questions and I don't mean to pry, but you are such a special case. Most of the people here, will sooner or later be joining the "ReOp " club and your expertise will ease their minds!

 

[Moo]

My Reason... (FULL BIO WARNING)

My Reason... (FULL BIO WARNING)

More than happy to tell you everything, if you want to listen...

Rich's Background:
I was told at birth that I had a "good murmur", that got better with exercise. I was always an active kid, baseball, football and tennis, and thought it was the extra weight and smoking that made me tired all the time so I never paid any attention to it. It wasn't until I was 15 that they investigated it and found out I had a bicuspid valve, severe stenosis (>100mm), severe regurgitation, 2 holes and slight degeneration of the aortic valve (Left Ventricle was 3x Normal Size to Compensate). From then on I had a huge chip on my shoulder, "why me", and did everything I could that the doctors said I couldn't, just so I could say i'm normal. My parents were more worried than me, as to be expected, and started to treat me like a 'boy in a bubble' (BIAB hereafter). This was the last thing in the world I wanted at 15, to be considered different, and not in a good way... Anyway, due to my requirement of not being a BIAB, I would not allow a mechanical valve to be implanted. They warned me that it (a tissue valve) wouldn't last more than 10 years and expected around 7 years for a re-op (I got 6.5, not a bad guess). The 1st surgery (I was 18) was a nightmare from hell, after 2 days of everything going well, my blood pressure dropped to 50/30 and everything failed (Lungs, liver, kidneys, etc.) but the brain and heart. I was in a coma for 3 weeks and the doctors told my parents they had only seen this reaction once (in a dog, no less) and I had very little hope of surviving and even if I did, I would probably have brain damage and need a kidney. Then a priest came in and read me my last rites, here was my chance to prove religion wrong... Out of nowhere (slowly), I had a full recovery and the only remnants I have are the terrible nightmares that I had the coma (yes, you can hear and have nightmares in a coma). I owe it all to a man named Niloo Edwards, who was the head of heart transplants at columbia university. He took a special interest in my case, even though it wasn't his, and became my regular doctor. He wanted to do experimental procedures (many of which are still not fully approved) and my parents said basically 'whatever it takes' and signed for them after the fact. Needless to say, it worked and I went home knowing I was not a BIAB.

Now after all of that, if you thought I would regret not getting it done right the first time (mechanical), you would be very wrong. I love the fact that I got to live the fun years (18-25 beacuse you have the ability to get into real trouble like I did, i.e. crashing my dirt bike and breaking multiple bones and ripping a 2" hole in my arm, drinking to excess, etc.) as a normal kid. I now have a mechanical and it has it's good and bad sides, like a little bracelet that basically says 'if victim is in an accident, call a morgue before you call the hospital to reserve a toe tag'. I am by far a proponent of tissue valves if you are under 25 simply because you only get 1 shot at life and if you can't live it the way you want, why live it at all. My second surgery had only a .5% mortality rate at columbia, I have at least that everytime I get on my motorcycle (sport bike) driving in NJ. If you are over 25, you've had your fun, get a mechanical and be done with it.

As for early removal:, AGE... That was the only reason. The "calshium dishposishion" ( as Dr. Naka says) is exponential (decreasing) with age, and at 18 it is extremely rapid.

Why Mechanical Now? I posed this to myself:

Just imagine your 35, married with 2 kids and your doctor tells you need a re-op. How does your wife (widow at this point) explain to your children that daddy isn't alive because he wanted more years to party before he came home to reality... Harsh, but true.

I couldn't find a way...

Target INR: 2.5 - 3.5, Only because it's mandated (FDA) to be that high (CYA tactics). They (My Cardiologist) allow me to go down to 1.7 before they get concerned and I only need Heparin shots if it goes below 1.5. They said the flow characteristics of the valve are incredible and it doesn't leave much time for the blood to clot. My INR is still being nailed down as i'm on 2-week intervals right now. My last 2 results were 2.6 and 3.1 over the last few weeks. When I saw the promise of the On-X I was sold, even if the asprin-only trial doesn't work out (I think it will) the INR tolerance is great.

Mechanical Longevity: Longer than me... I asked my cardiologist (Harvard Grad) and he laughed , you have too much logic (IQ=138, not bragging) and not enough facts. The suture myth is wrong, after a few years its the scar tissue that keeps the valve in place, not the sutures...

As for Re-Op: Open-Heart Surgery Sucks... But, it comes with a 3 Month Vacation . I had minor issues but was home the 8th day (could have been the 6th but my INR took a while to catch up). I felt incredible, with this new flow (better than the Cow Valve and the OEM ) I was able to "do it" on the 9th day (and 11th for that matter) with the expected muscle pain afterwards. I went to my Cardio after 2 weeks and he said I looked and acted like I was 2 Months Post-Op. So have hope, Not all re-ops are worse, mine was better.

As for Coumadin: To me, its bark is bigger than it's bite. It seems the higher my INR the more I bump into things (Some mutation of Murphy's Law) and I have whacked my arms and legs really hard without seeing a single bruise to date while being "In Range". I still use my "Hard" tooth brush, and floss vigorously, even though they told me not to, and still no blood to be had. The only part I hate is the alcohol part, I don't drink often, but when I do, I go all out. This is the worst type of drinking with anticoagulation (due to extreme blood thickening after you 'break the seal'), i'm still investigating a way around it. So have hope, coumadin may not be that bad (No Guarantees).

Sorry if it was too much info, but that's the abridged version,

Rich

 

[Moo]

Clarification

Clarification

Once bitten, twice shy often applies to surgeons. My (clearly in the dark) guess is that since the bovine tissue valve was oversized at initial implant (causing the suboptimal leaflet co-aptation, poor hemodynamics, exacerbated stress on the leaflets, early failure, and subsequent explant), he got flustered and decided to go mechanical.

ST

He still asked if I wanted another Tissue, and said he would do it if I wanted to... My cardiologist (who knows my need to make things difficult) had a whole speech prepared to convince me not to get a tissue valve, and when I cut him off after the 1st sentence and told I already decided on a mechanical, he almost fell off the chair...

 

[RCB]

Thank you Rich

Thank you Rich

Very Impressive!