SynerGraft & Similar

[tobagotwo]

I am interested in the SynerGraft or similar type denucleated valve (a.k.a. "Grow-your-own" or "Chia" valve).

I know the SynerGraft was shelved for a while, but I wondered if it's coming back out.

I see they are using similar items in Great Britain and Germany, but I don't know where/who to contact about them.

I'm 51, otherwise healthy, and really don't want to go the Coumadin route. The heart is nearly normal, except the pressure is 68, valve under a cm. The doctors freak when I say I don't want a mechanical. This is THE place for this information, so I'm looking to see if anyone has a glimmer.

The cardiologist is saying I need to find a surgeon now, and I'm trying to explain to him that it looks like I need to find the valve first, then follow it to the surgeon.

Thoughts on sources? Leads?

 

[Tom F.]

Two questions, first, what kind of hospital are you dealing with? I found that many larger teaching hospitals were more open to folks that do not want a mechanical valve.

Second, at your age have you considered a Ross Procedure?

 

[dwfreck]

I asked my surgeon specifically about the SynerGraft valves and he said they were off the market and waiting for some sort of FDA approval to come back on the market. I've been haunting CryoLife's web site, but haven't seen anything indicating progress with the FDA. As for the "other" types of "grow your own" valves, from what I've read they're all still in animal trials or very early human trials, so not available to the general public (and frequently not at all in the US). I haven't checked up on that information yet this month, so it could be out of date.

 

[tobagotwo]

The Ross Procedure is a thought, but I have to see what their opinion is about the heart as a whole - whether I'll just calcify that one, too. The reports I'm seeing now about results seem more promising than the reports from four years ago.

I have a cardiologist right now. I don't have a hospital, because I'm frankly tired of arguing with doctors who shoot from the hip about what valve I should get. I'm concerned they'r efgoing to bully my wife into pressuring me to "do what they want you to do."

I have a great admiration for the many people on this site, and whom I know in person, who deal with Coumadin every day. I know for some, it works out quite well, and for others, not so well.

As it stands, I love fishing (many hooks) and fossil collecting, which involves sharp and heavy rocks, chisels, and big hammers. And I have my share of clumsiness, to boot. I also wonder if there are pressure concerns for free diving 35' or so, when on Coumadin. Heck, they didn't even want me to do that four years ago, with just AS.

As far as the SynerGraft, there was a news release (2/6/04) that they had just filed a few, last papers wiht the FDA, towards going back on the market. Thet generally means 8-24 months in the FDA's Department of Agonizing Reappraisal.

I've not yet connected with anything solid on the Eurovalves, but am hopeful someone has a link, or that I just haven't looked hard enough yet.

Right now, I'm centered on the Mosaic valve from Medtronics, as it seems the only reasonable choice available right now (for my personal criteria). It has an anti-calcification treatment that is expected to greatly extend its useful life. If anyone has leads on who might be using that valve, I would appreciate hearing from you.

 

[Turkey Hunter]

I'm going to have to agree that going to a larger teaching facility will open up your options.
Those facilities have their own cardio's and my experience shows there is no pressure to do wht they want.
They want what is best suited for you.

At least with my docs at CCF.

Ben

 

[tobagotwo]

Thank you, Ben.

I think it's impossble to look at this procedure ahead of time and not at least consider CCF in passing. CCF, Brigham's & Women's, Mass General all look good from this end, with their low stats. Assuming that's not just better bookkeeping at work (and it probably isn't).

If CCF might be more willing, that's so much better than fighting with the locals. I will have to do some work with my insurance company, but I believe they do have some agreements with CCF. I still haven't heard back from Medtronics re which instiututions are known to be using the Mosaic model, though.


General Question: If your cardiologist does a cath, will the surgeon still require his/her own cath before proceeding?

 

[dwfreck]

While I agree that your choice of a surgeon may depend on your choice of a valve, I think you should go ahead and talk to a surgeon. Just because you talk to a surgeon doesn't mean you're stuck with using that person (I talked to one, then talked to his partner, then selected the partner). The surgical community should have the most up-to-date information on valve choices, so a surgeon can be a good source of information.

If your doctors shoot from the hip, you shoot back! Doctors frequently have to deal with people who don't even know they're sick, let alone know what their treatment options are. Make sure your docotrs know you've educated yourself, and tell them what your personal criteria are. They should be willing to work with you to satisfy those criteria. If you choose a particular valve model, like the Mosaic, you'll obviously want a surgeon who has worked with that model; the doctors you talk to should be able to help you find such a surgeon.

Make sure your wife is involved in your decision-making process; she'll be better able to resist bullying if she knows what you're thinking.

It sounds like you're doing a lot of good work on the research. Hang in there. You'll come to the right decision for you sooner or later.

 

[Turkey Hunter]

Answer to question

Answer to question

The surgeon may very well require his/her own. at CCF-No.

CCF did however required an additional MRI of my ascending aortic arch due to the fact that the one I had locally (prior to even going to CCF) did not meet the quality of what the docs at CCF wanted.

I would encourage anyone to go to CCF. Not only were the docs great....they wanted me to be educated to make the choice myself, rather than they being completely responsible for the decision.

You're on the right track.

Ben

 

[Rain]

Why did it work on Ben?!!

Why did it work on Ben?!!

HEY!


Ben, they tried to do an MRI on my Ryan and couldn?t do it. They said they tried everything imaginable, but he was just too tall. He?s just over 6' 8" The lady said the machine works best on people up to 6' tall?!!! How tall are you? Seems I remember you being well over 6' .... makes me wonder if I?m dealing with some ?shade tree techies?. Grrrrrr..

Tobagotwo..... I hadn?t even thought about my insurance co ?having an agreement with CCF??! We paid a flat $1,000.00 for my open heart surgery. But if we had went out of state it would have been 30% of the total cost. Money suddenly has a lot less value when you?re talking about your kid!! I?ve been looking at hospitals and surgeons everywhere.

 

[Turkey Hunter]

Hey

Hey

Rain, I am about 6'6". The open top MRI's seem to work better. the closed one's....I don't really fit inside. Height or shoulders.
Have them speak to you on the open MRI's!!

As far as agreements with CCF. CCF's doc's are all on salary so the charges for different procedures are "set rates" many insurance companies like that. Bassically, you won't recieve multiple bills, just one from CCF.

Gotta run....meetings.

Ben

 

[tobagotwo]

I just got back results from Medtronics, and they're pointing to Morristown Memorial and Robert Wood Johnson. I know RWJ is a teaching hospital.

Anyone with thoughts on either of those two establishments?

Does anyone know how I could go about finding out their, um, well...you know...mortality rates? And nurse-to-patient ratios? Are they required to reveal those things if you ask? Is there a source? I'm sure they're not in the top 100, so probably not in that published list, unless it extends past what I looked at.

Perhaps things have changed, now and surgeons are more amenable to other cardiologists' catheterization results. Maybe I should relent and let my cardiologists do it. I just don't want to do it twice for no reason.

 

[Bryan B]

I live in Nashville but plan on having my surgery at Duke. I talked to my cardio here in Nashville about the possibility of having my cath here before going to Duke for the surgery. He said that more than likely the surgeon will want to have it done at Duke so he can "customize" the things he wants done during the cath.

 

[tobagotwo]

That sounds more like the picky surgeons I used to read about. I believe CCF used to require it as a matter of course. Apparently, not anymore.

MY wife has had some time to do research and really get involved in the valve choice. I no longer feel that it would be possible for anyone to use her concern for me to pressure her. Once she has solid ground under her feet, she is a rock.

Any further opinions about the Mosaic valve or whether the surgeon will want his own, customized cath done would be appreciated.