Surgeons disagree

[Catie]

If anyone replies, please be gentle with me. I'm hurting emotionally.

Saw a well-established local surgeon today. The previous consult had been long distance with a Cleveland Clinic surgeon who reviewed all my records, CTs, echos, etc.

Local surgeon says my aortic root is dilated and will need to be replaced. The CC surgeon said my aortic root is fine.

Of all the possible outcomes, I didn't expect the surgeon I saw today to say Cleveland Clinic missed something important. It is agreed that aortic valve and aneurysm part of aorta must be replaced.

If it's true, it sounds more complicated. But don't know what to think. Or quite how to resolve.

 

[pellicle]

Hi there

this stuff can be exacerbating of our emotional state can't it ...

Local surgeon says my aortic root is dilated and will need to be replaced. The CC surgeon said my aortic root is fine.

well firstly to me I don't think its complicating, just "determining properly what needs to be done. I seem to recall reading that replacing the root led to better outcomes, I'll have a ferret around and see where I think I read that and check.

Either way, while its part of the descriptions that they give to you I don't think its a significant complicator.

Like you said, the CC consultation was a remote one, and its possible they missed that point. Its not like reading a book, and these "scans" are never definitive. Indeed many times they get in and find its a little different to what they'd resolved in imaging anyway.

Chin up ...

 

[Catie]

Grateful to you, Pellicle.

He talked about installing a porcine root. I guess like the medtronics one I found. I am not at all enamored of needing multiple appliances.

http://www.medtronic.com/us-en/heal...ical/freestyle-aortic-root-bioprosthesis.html

In practical terms, maybe I call my new cardiologist tomorrow. Maybe he can suggest someone to help clarify. Speedily.

 

[pellicle]

.
He talked about installing a porcine root. I guess like the medtronics one I found. I am not at all enamored of needing multiple appliances.

A bit like that one.

I understood that the aortic root and valve pre-attached makes installation easier than (say) a valve sparing surgery. But as you're having a valve redone anyway, its good to get the aortic aneurysm nipped in the bud at the same time.

As I understand it its more or less just one installation as they come from the factory "as one part", so its not really "multiple appliances"...

As to which type (porcine or mechanical) that's a matter for other parameters. Either will install well and I don't think there is any additional layer of complication from what I know. Its just down to you then going through the parameters from your previous posts / answers and determining if you feel more comfortable with bio-prosthesis or pyrolyticcarbon-prosthesis.

Each has a different "management" strategy.

Mine is a bit like this:

instead of just a plain valve like this:

In some ways having all this to solve soon is actually a blessing, its like a big fight then back to other things in a short time.

Best Wishes

 

[Agian]

Don't be sad Catie.

I've just come out the other and. I thought he was going to replace my aortic root, but when he got in there he decided to repair it instead. He told me the aortic tissue was 'plumb normal'. It doesn't really complicate things to fiddle with the aorta when they do the valve. He basically told me there was no further risk of aneurysm.

 

[Agian]

PS Get as many opinions as you need to feel comfortable before going in. Focus on the surgeons rather than the cardiologists. I found out the hard way that the cardios know (ahem) very little about this stuff, relative to the surgeons.

There is no reason not to have a tissue valve and a Dacron graft.

 

[honeybunny]

I agree with the above responses. Get a third opinion, and if it's determined that you need an additional replacement don't be too alarmed. But discuss repair and how they would determine that once you are in surgery. Sending positive thoughts your way.

 

[AZ Don]

My first thought is that perhaps the Dr's can clarify their position. Why does the local Dr. want to replace the root? Is it because of the size or simply because it is in between your aneurysm and your valve, both of which are to be replaced. Given that I imagine it is a much simpler procedure to replace the root along with the valve and part of your aorta. (As Pellicle mentioned, valves can come pre-attached to an aortic graft making installation easier). How would the Cleveland Clinic Dr. spare the root while replacing what is on both sides of it? I imagine this is a more difficult procedure, something that Cleveland Clinic might do more than other hospitals. If so, what are the risks vs. benefits of this approach?

While additional opinions might be helpful or even necessary, I suggest to clarify the reasoning behind the opinions that you already have received first. Perhaps it would be helpful to bring someone with you when you see the local Dr., or speak to CC. It can be difficult to absorb everything you are told and to ask all the right questions in a short consultation. It's your heart they are going to be working on, you are entitled to a full understanding of the issues before proceeding.

 

[Catie]

Thank you, everyone, for being generous with your thoughts. Agian, I'm glad to hear how things worked out for you.

I may need to live with this gray area for just a little while until I can get more information. Maybe reading CTAs is more an art than a science. I wonder whether they get a clear view on size of the root during a catheterization. That's still to come.

Emotionally, I feel less trusting. But intellectually, it is hard for me to picture a surgeon at Cleveland Clinic neglecting any aspect, particularly once inside with all parts visible.

AZ Don, the issue is size. I could ask the local surgeon more questions via his nurse. But his explanation and attempting to show me on my CT the dilation of the root was sufficient for me right now. That's the difference between their two positions: Cleveland Clinic surgeon stated my aortic root is normal (not enlarged) and would not need surgical intervention; local surgeon said it's dilated, hence requiring surgery. Full incision & sternotomy, if he does it

I haven't met with the Cleveland Clinic surgeon, and the long distance consultation included six questions total, which I've asked and had answered. I'll need to see him or another surgeon in person to pursue more information there. I phoned up the remote consult staff this morning.

My tipping point to need surgery is from the aortic aneurysm. I'm asymptomatic with my valve. I did learn that it has just with the June echo moved from moderate into severe stenosis, so its time would have come soon anyway.

Cleveland favors tissue valves & minimally invasive approach.

Local surgeon's opinion is that I should avoid Coumadin, because of my history of gastric erosions. It's been awhile since I've had an erosion, but last year's EGD showed mild esophagitis and my stomach remains very sensitive to meds. He proposed one month of baby aspirin after implant of bovine valve & dealing with aorta & root.

Both surgeons believe a GI consult is in order. Cleveland's #2 in the nation for GI.

 

[cldlhd]

If it's somewhat dilated and you have an ascending aneurysm and the valve needs replaced I don't understand why they wouldn't give you a valve in a graft all in one as it seems the root would likely need replacing one day. I told my surgeon to do all that needed done while he had the wheels off.

 

[Catie]

Thanks for your reply, Cldlhd. I concur about getting it all done in one swoop!

Yeah. I don't know enough how these things work. I just know the local surgeon this week suggested bovine valve, porcine root and replacing the diseased part of my ascending aorta.

And that his saying my root is enlarged conflicted with the Cleveland Clinic surgeon's belief that my root is normal and wouldn't need replacing.

 

[epstns]

Be sure to ask your eventual valve surgeon what their protocol is regarding anticoagulation for tissue valve recipients. At Northwestern, Dr. McCarthy prescribes a 3-month course of warfarin for his tissue valve patients, just as a precaution.

 

[Catie]

Thanks, Steve.

The Cleveland Clinic surgeon who did my written, long-distance consult indicated there would be no Coumadin with tissue; same with the surgeon I saw Thursday. Both suggested I get another GI work up.

I haven't decided who to talk to, to do the tiebreaker on the aortic root question. Since I've been leaning toward Cleveland, maybe a different surgeon there than did the remote consult.

 

[Paleowoman]

The Cleveland Clinic surgeon who did my written, long-distance consult indicated there would be no Coumadin with tissue; same with the surgeon I saw Thursday.

There you are - that is one weight off your mind Catie !

 

[Catie]

Thanks, Paleogirl. My preference wasn't to get a tissue valve, but it appears I may need to go that route.

Local surgeon would do full sternotomy, which isn't optimal with me being as isolated as I am. Cleveland had proposed a minimally invasive approach. But now I need a 3rd consult, since local surgeon disagrees with the Cleveland one. I don't know how Cleveland would approach my stomach issues and aspirin. Will decide soon on who to see next. Hoping my cardiologist's office will call today, and I'm also waiting on a local GI consult.

 

[Paleowoman]

Local surgeon would do full sternotomy, which isn't optimal with me being as isolated as I am. Cleveland had proposed a minimally invasive approach.

My surgeon had planned to do minimally invasive surgery, that is a mini-sternotomy, but when it came to the operating theatre she couldn't access my aortic valve that way and had to do a nearly full sternotomy instead. What I'm saying is that a surgeon cannot always do what is planned, plans change during surgery. Regardless, minimally invasive surgery doesn't necessarily mean less pain or quicker recovery though that is the idea behind it - there's one here on forum who appeared to have a lot of pain following minimally invasive.

 

[Catie]

Thank you, Paleogirl. I understand. One can only take in the information they give, hope for the best, and then adjust if the outcome is different.

I did read a testimony of one woman who had min invasive valve surgery who must've had one of the speediest recoveries on record--and virutally no pain. I know that's not the norm. A girl can dream.

 

[Paleowoman]

Hi Catie - I've been trying to find a link that I found before I had my AVR, without success. The link showed the various types of minimally invasive aortic valve replacement, I think there were three types, though I've only come across two on forum. There's the mini-sternotomy which is a two or three inch incision in the sternum, and there's a thoractomy, I think that's how it's spelled, where an incision is made between two ribs, I don't know which side - wish I could find the link for you.

 

[Zoltania]

The issue post-surgery isn't just pain, it's weakness. I felt pretty weak at first despite my minimally invasive incision. At first I even sat down to brush my teeth because it took too much energy to keep standing. Same thing for showering. Maybe I recovered more quickly than I would have with a sternotomy, though of course there's no way to tell.

 

[Catie]

Paleogirl, thanks. I'm aware of both. Can't do the right thoracotomy because of the aorta work that's needed. It was sweet of you to look for the link. Mine would be the partial sternotomy, if possible. I keep remembering what people shared about not being able to open the fridge!

Zoltania, I appreciate your comment. I'll bet it completely wrings you out. Makes sense about teeth and hygiene. I'm thinking to buy some adult bath wipes to use instead of trying to climb in the shower the first while.

New cardiologist's office called me today to answer my query. He said the root is definitely involved and will need replacing. Wants a CT angiogram soon.