Met my surgeon today, need some advice

[alex c.]

Well I just posted my first thread a week ago when I found out I needed surgery asap. I am so glad I found this site that same day. It has helped me quite a bit feeling better about the whole process.

I met with my surgeon and I feel really good about it all. He is a very nice person and was super easy to talk to. I have some questions though, he said he uses St. Jude valves which I know (from this site) are great valves, but I really wanted an On-x valve for the simple reason of maybe not needing coumadin in the future. He said he's heard of them and that they are great valves but believes they only make mitral valves and I need a mitral and aortic. Is this true? Please tell me its not.

My boss' brother is a retired heart surgeon in Ca. He spoke with my surgeon here and told me I have a great surgeon. So in that aspect I feel good. My surgeon said, he didn't see a problem with me going back to the gym and doing similar weight to what I did before, but to take it really slow and to work my way up. From what I've read here, that doesn't sound right, but the main thing now is which valve to use. What does everyone think? He can do the surgery Nov.10th or 16th.

Thanks
Alex

 

[Magic8Ball]

Yep onx do aortic valves also.

I'm looking at having surgery on the 16th nov also...small world.

My surgeon also suggested st-jude for my avr, his reasoning was that st-jude is trusted and proven and onx does not have the track record yet. He said onx may prove to be just as good as st jude but it will unlikely be better than st jude so why take the gamble at this stage.

I don't think i'd be comfortable reducing my warafin levels in the future anyway, i'd want a 20 year study to have taken place before i reduced any levels of medication, i'm not keen on having a stroke just for the benefit of a night on the beer.

If you think you have a good surgeon then take his advice, its what i've done and i think i'm a calmer person for going st-jude....i want tried and trusted technology in my chest not what if's and possibilities.

I'd certainly be having the same brand in both positions if i was in your shoes, i don't think i'd have one of each...

Good luck with your decision...

 

[alex c.]

Yep onx do aortic valves also.

I'm looking at having surgery on the 16th nov also...small world.

My surgeon also suggested st-jude for my avr, his reasoning was that st-jude is trusted and proven and onx does not have the track record yet. He said onx may prove to be just as good as st jude but it will unlikely be better than st jude so why take the gamble at this stage.

I don't think i'd be comfortable reducing my warafin levels in the future anyway, i'd want a 20 year study to have taken place before i reduced any levels of medication, i'm not keen on having a stroke just for the benefit of a night on the beer.

If you think you have a good surgeon then take his advice, its what i've done and i think i'm a calmer person for going st-jude....i want tried and trusted technology in my chest not what if's and possibilities.

I'd certainly be having the same brand in both positions if i was in your shoes, i don't think i'd have one of each...

Good luck with your decision...

Yes, it is a small world isn't it?

You make very good points there and one's that I thought exactly. I don't think I would be lowering my coumadin levels anytime soon either. I am a cautious person also & would have to be absolutely sure (with like a lengthy study) before I lowered my levels. I'm trying to think of the future. What if On-x patients DO end up off of coumadin and I have to take it forever? I don't mind the hassle of just the pill popping, but I'm concerned with possible bleeding from an accident or similar. After going through something like heart surgery, I'd want to return to normal as possible, even if it does take 20 yrs.

I have a very difficult decision indeed. Now that I know On-x DOES make aortic valves, what if my surgeon doesn't want to implant those? Do I look for another surgeon? What if he does and I will be the first he implants them on? Oh man, I don't know what I'm going to do .

 

[ALCapshaw2]

If you have your 'Heart' set on an On-X valve, it sounds like your best option is to find a surgeon who has (lots) of EXPERIENCE with implanting On-X Valves.

The way I see it, EVEN IF you stay on Coumadin, it would seem to me that an On-X valve is less likely to cause clot formation and that is a BIG PLUS in itself.

'AL Capshaw'

 

[Karlynn]

The way I see it, EVEN IF you stay on Coumadin, it would seem to me that an On-X valve is less likely to cause clot formation and that is a BIG PLUS in itself.

'AL Capshaw'

and this is kind of the way I look at it too. If I had to have my St. Jude replaced I would seriously consider the On-X. But my St. Jude is now 15 years old (still working well) and there have been improvements to their valves to as far as hemodynamics and clot formation. It's a tough call. I don't know the exact # of On-X that are now "in use" today , but I'd be curious to know more detailed info.

Just a FWIW, the day to day worry of accidents and bleeding doesn't really exist for me. In my opinion, the issue is more the management of coagulation if/when you need to have some sort of surgery or procedure that requires you to be coagulated. But there are successful ways to manage that if it comes. It has yet to come for me, but I know it will someday. I'll deal with it then.

You have a tough choice. There is something to be said for finding the surgeon that will give you the valve you want, but also going with a surgeon that has been highly spoken about and going with their choice.

Best wishes!

 

[catwoman]

Alex:

St. Jude makes several mechanical valves. You may want to check out this link and then ask the surgeon which St. Jude valve he generally uses.

http://www.sjm.com/devices/devicetype.aspx?location=us&type=18

 

[ALCapshaw2]

Someone else recently asked about On-X valves

Here is their public contact information from their website www.onxvalves.com as found on GOOGLE

Contact MCRI
Information Request Form

Customer Service: [email protected]
phone: (888) 339-8000 extension 261 Toll free US and Canada
phone: (512) 339-8000 extension 261
fax: (888) 339-3636 Toll free US and Canada
fax: (512) 339-3636

Marketing: [email protected]

I've been communicating with a representative of On-X
and learned that they are NOT a principal provider at
Cleveland Clinic, or Mayo Clinic, or Beaumont (MI).
These are highly (price) competitive markets.

The Major Users of On-X are:

GEORGIA (The FDA study on On-X is based at
Emory Crawford Long Hospital in Atlanta)

Columbia Presbyterian in NYC
UCLA in LA
Texas Heart Institute in Houston
Several in Florida
Kaiser in California

Recently started at DUKE in NC

'AL Capshaw'

 

[alex c.]

Thank you all for your replies and advice. I have contacted Catheran from On-x and she sent me a list of surgeons who have implanted and who are willing to implant. Among the willing is the surgeon I met Tuesday. I'm not sure I want to be the first, but all the surgeons who have implanted don't work with kaiser. I'm trying to get kaiser to make an exception and send me to another surgeon. If not, I may have to be the first, which brings up another question.....if a surgeon can implant mechanical and the various tissue valves, how much difference is it to implant from one mechanical brand to another? NOT that I'm trying to convince myself anyone, but just trying to make a better decision.

Thanks

 

[MelissaM]

Hey Alex,

Good news for you! Since Kaiser California is a major user of On-X valves, you are in a better position to argue that Kaiser Colorado should also be using them. You could also broach the subject of traveling to a Kaiser Californa facility to have it done there (I traveled for my surgery, not that big of a deal).

W/r/t to being the first, the issue isn't really one of being able to do it, or it being that different, the issue is having the experience to deal with the nuances of the situation. It also comes into play if there are complications. An experienced surgeon will know how to deal with those complications better than an inexperienced surgeon. The question an inexperienced surgeon must always be asking himself is, "Is this normal for this type of valve?" - He won't have the experience to know.

I would think the proper sequence would be to observe several surgeries, try several surgeries under proper tutelage, and THEN try one on your own. You could see if the Kaiser surgeon has done any of those things.

Melissa

 

[alex c.]

And ON-X flys in there people to assist during the surgeons first few valves , so you get a freaking team of people for the price of one.

I contacted the Denver rep a cpl of days ago and he told me the same thing. He told me he knew the Kaiser surgeon personally and he was going to talk to him on Mon. He told me, "if you end up getting the On-x valve with him, I will be there for your surgery". Wow that is pretty cool. I still have to decide if I want to take that chance, if the kaiser surgeon is up to doing it. I want to be able to make my decision next week if possible.