Heart Valves and Second Opinions

[strudell]

I met with my surgeon last week (Thursday) for the first time and he was very nice. Basically I will need to have the surgery in the next month to two months. He was very helpful and gave me a bit of good news. He performs a less-invasive surgery for AVR and that made me feel better.

So now I've had three Doctors review my results and all have said that I need surgery soon. My Surgeon said all I have to do is decide which valve to go with: Mechanical or animal.

I've been reading through these threads and am leading toward the Mechanical valve because of my age (39).

My frustration right now is getting a second opinion. I know I need surgery, but I just need additional advice on the Type of surgery and the Type of Valve to get.

How important was it for you to get a second opinion and how long did it take? I'm anxious to go ahead and get this operation done, but I don't want to rush it. But then again, my surgeion suggests that I get it done relatively soon and because I just discovered I had Aortic Stenosis with sever eregurgitation, I feel like I got lucky and just want to get this done.

Your thoughts?

 

[MikeHeim]

My views are somewhat different than others' around here, so I'll get them out of the way. It's my feeling that you only need to get at many opinions as it takes to make you feel comfortable and confident. You mention that you've seen three doctors and they all agree. If you keep searching long enough, you'll find a doctor that wants to wait - it happens here all the time. If you're in agreement that the time for surgery is near, it won't do you much good to get more opinions.

As far as valve selection goes, all of the pros and cons of both mechanical and biological are laid out on this site pretty extensively. In fact, I would consider the information you get here to be even more valuable than what any one particular surgeon can tell you. There are hundreds of people here with both tissue and mechanical valves, and all of them are great resources to tell you the true ups and downs of each valve as they are the ones living with them.

Best wishes going forward.

 

[Phyllis]

If you are happy with your first opinion and it is a surgeon who has done many avrs and you also have confidence in the hospital, then a second opinion may not be necessary. Take a look at this thread about valve selction: http://valvereplacement.com/forums/showthread.php?t=14330

 

[dick0236]

Mikeheim has pretty much said it all. If three out of three surgeons agree that it is time, that should take care of that decision. The choice of valve type becomes very personal. Talk with your surgeon, cardiologist and for sure read thru the posts you find here. If one type of valve was obviously superior, they wouldn't be giving you a choice. Each type of valve has pros and cons....and you have to decide whether you can live with the cons.

My valve is mechanical, but back then there was no other choice. I am really glad that my surgeon could not lay the valve choice decision back on me. With a lot of hindsite, the pros of my valve have far outweighed the cons. Do your homework, make the choice, accept your decision.....then go fishin'.

 

[Ross]

Do your homework, make the choice, accept your decision.....then go fishin'.

...and don't be bringin back any of them thar pan fish.

 

[briansmom]

I agree 100% with the advice you have gotten here. It sounds like you are well on your way to getting to the other side of the mountain

 

[ctyguy]

You said you have seen 3 doctors, were they all surgeons or were two cardiologists ? Not that it really matters because all are telling you the same thing, get it done. Your in Michigan so if you REALLY feel a 2nd surgical opinion will give you what you need you should consider the Cleveland Clinic. Its close enough for you to drive and they supposably do more heart procedures than any other hosipital in the country. I had a mini-AVR there (minimally invasive) and will be 8 weeks post op this Friday. Im back to exercising, running, doing yard work and so forth. I still shy away from anything that involves my chest muscles or would strain my sternum but I definitely think Im close to fully healed. Given the size of C.C. you can probably get yourself scheduled to meet with someone within a week or two. I went from diagnosis in Columbus via a different cardiologist to a 2nd opinion at C.C., met with the surgeron, and was on the table all within 15 days.

I went mechanical (On-X) due to my age also (42). I didn't like the thought of going through this process multiple times as I get older. Of course there is no guarantee that I won't need further surgery but I felt mechanical at least gave me the best chance. There are things you have to accept with this type of valve but Im hopeful that the On-X study will prove that Coumadin can be eliminated at some point. That didn't really factor into my decision on valve type but its a nice bonus if it turns out to be true. The flow dynamics of the valve is what got me. And my surgeon has installed a good number of these valves and swears by them now when he does a mechanical replacement. So no more hockey or football but thats something I can handle.

Bottom line is find a surgeon your confident in and get yourself scheduled. The waiting is the worst part of the whole experience.

Best of luck...

 

[Superbob]

As far as getting a second opinion on valve type, I never got a first opinion. My surgeon, who is a great one, left the choice totally up to me after giving me info on all the options.

The biggie is deciding to have the surgery. If you've had three competent doctors tell you you need the surgery, chances are you don't need yet another opinion. I am not saying valve choice is not a major decision -- it is. But you can get all sorts of opinions on that. You can list the pros and cons of each type, and consider your own priorities. But you need to decide what's best for you and go with it.

 

[strudell]

Two were cardiologists and the third was a surgeon.

I decided to contact two other hospitals for opinions, not necessarily on whether or not I need an operation, but on what options I have for valves, types of procedures and experience.

I contacted the University of Michigan and the Cleveland Clinic last Friday and only UofM called me back. C.C. sent me an email and I recalled them today to leave a message.

The good news is that my current surgeon trained at the Cleveland Clinic. He suggests either the St. Jude or Carpontier Valve. When I asked about the Ross Procedure, he said he wouldn't suggest it.

I just know I'll feel better if I here a few more choices. U of M won't accept my insurance. Not sure yet about C.C.

Tomorrow I am talking with the anti-coagulant clinic director for my hospital to discuss the ups and downs of taking Coumadin. I'm still a bit fuzzy as to how often you need to test and restricting my activities (I hunt and fish) and diet.

 

[Karlynn]

Lots of good suggestions here.

I would ask that you give us a synopsis of what the manager of the clinic tells you.

Sadly, the biggest pain for many of us that take Coumadin is having to deal with people in the medical field that do not keep up to date on current protocol. Yes, even managers of anticoagulation clinics have been know to give some really bad information. I recommend you read the stickies at the top of the Anticoagulation Forum. If you come away from your meeting feeling that your lifestyle will be severely limited, chances are you've been given bad information by the clinic.

I would specifically ask about home testing. If they tell you it's not accurate or not advised - that will be your clue that they are not up to date on major studies.

On the positive side - maybe you'll come back and report a clinic that "knows it's stuff".

 

[ctyguy]

My surgeon and cardiologist at C.C. both said the Ross procedure wasn't something they would recommend. Both said you potentially become a two valve patient instead of one, thats all I needed to hear.

As far as the surgeons at C.C. I would suggest you go to the website, read their profiles and take the initiative to contact one. That is what I did and Dr Pettersson agreed to meet with me a few days after I called his office. His assistant was really great in helping me get in to see him. I also wrote a page and 1/2 letter that told them about myself, my lifestyle, and my medical history. Not sure if that helped or not but I think by taking the initiative and persuing the surgeon it got me what I wanted, a top surgeon at C.C. Dr P. does about 300 heart procedures a year.

 

[ctyguy]

Also...regarding coumadin. You can still hunt and fish all you want, just need to be careful with major cuts. In regards to your diet you can pretty much eat whatever you want as long as your consistent, thats the key to anti-coagulation. A heart healthy diet would serve you best but there really aren't any diet restrictions.

 

[strudell]

Talked with the administrator of my Health System's Anti-coagulation clinics todeay. She gave me some great advice and was extremely helpful.

Basically she said I wouldn't be overly restricted on Coumadin, to keep to my regular diet, be careful around anything that would severly cut or injure me. Alcohol should be avoided.

She did say that there are home testing options available, but only after I get my INR status. For the first few weeks I will need regular tests. My insurance should cover it because its for heart valve replacement.

I asked her about activities like hunting and fishing and she said its just a matter of being watchful and careful of my surroundings. Beer stands after Rugby matches may be out for me

I did have a small concern about being on Heparin at first, but I guess its only temporary.

Having a home testing option is nice. All in all, she said she's going to send me all of the material that give to new users so I'll be able read up some more.

When it comes down to it I seem to be leaning toward mechanical because the thought of having to go and have OHS again in ten years is a bit disconcerting. My wife thinks that if I go with bovine, then there might be something new and improved in ten years time.

The Carpontier Edwards site said their valve lasts upwards of 25 years, but to those I've talked with said its actually closer to 10.

Thanks for listening.

 

[Karlynn]

Great - your Go-to person passed the test - mostly .

Overconsumption of alcohol is to be avoided - but unless you have bleeding ulcers, many of us consume adult beverages on a regular basis. I opened a glass of really nice Merlot and have been partaking of a glass a night - okay - one night it was a healthy glass. And if there's margaritas around - don't get between me and them!

New medical advancements are being made all the time. The On-X mechanical valve is now in low/no warfarin (Coumadin) trials. They're hopeful how things will turn out, but you never know. They're doing valve replacement via catheter now on those who might not survive surgery. It is unknown whether it is going to apply to those who are healthy enough for open heart - but people are hoping. It's my humble opinion, and some others disagree, you should make your decision on what is possible now.

 

[ALCapshaw2]

Longevity of the Carpentier Edwards Bovine Pericardial is approaching 20 years at 90% freedom from explant when implanted in OLDER patients (over age 60 at the time of surgery). The new anti-calcification treatments are hoped to extend that durability to 25 years or so.

Unfortunately, Tissue Valves 'wear out' faster in younger patients.
Graphs showing "Freedom of Explant vs. Time and AGE at implantation have been published, I just don't remember where.

MY Big Question for the catheter replacement proponents is How Large of a Tissue Valve can they sew INSIDE the existing valve? Note that a valve that has 70% of the diameter of your existing valve would only have 49% of the AREA and by the laws of fluid dynamics, have a greater pressure gradient across the valve than your native valve. I've not seen any reports of the Fluid Dynamics and exercise performance of such valves. They are a GREAT alternative for those who have NO other alternatives.

'Al Capshaw'

 

[Ross]

Tomorrow I am talking with the anti-coagulant clinic director for my hospital to discuss the ups and downs of taking Coumadin. I'm still a bit fuzzy as to how often you need to test and restricting my activities (I hunt and fish) and diet.

Want to know the largest down about Coumadin? Patient managers that don't know what their doing! That's it in a nutshell. Don't be surprised if the person you talk to has no clue either. Want to know about Coumadin, the myth and reality? Go to www.warfarinfo.com and start reading. You can hunt, fish, and eat anything you want. If someone tells you that you have to modify your diet, walk away and find someone that knows what their doing. Guess I'm late to this party. Oh well.

BEER=GOOD unless you are predispositioned to ulcers. You can have your beer too! Just don't take it to the extremes and go drinkin like a teenager.

 

[terryj]

My husband hunts,fishes,cuts our firewood with a chainsaw,built our deck and pool deck and works as a Miantenance Mechanic. He has been on coumadin for nearly 7 years. He got hit in the mouth with a steel pipe at work and required a few stitches with no heavy bleeding. As far as alcohol, we were told by his surgeon that as long as he did not overdo it he could have beer,wine and alcohol. Your choice on your type valve is entirely yours to make but my husband has had no problems with his mechanical valve or coumadin.

 

[Ross]

My husband hunts,fishes,cuts our firewood with a chainsaw,built our deck and pool deck and works as a Miantenance Mechanic. He has been on coumadin for nearly 7 years. He got hit in the mouth with a steel pipe at work and required a few stitches with no heavy bleeding. As far as alcohol, we were told by his surgeon that as long as he did not overdo it he could have beer,wine and alcohol. Your choice on your type valve is entirely yours to make but my husband has had no problems with his mechanical valve or coumadin.

My wife wants to know if she can borrow your husband for about a year?

 

[CHDDoug]

I'm curious of the reasoning for saying that he wouldn't suggest the Ross procedure. Did he give you any reason? I think that's a personal choice...as long as you are a candidate...and they can't really tell if you are a candidate until they have your chest open (they can take a preliminary look from your echos, MRIs, etc, but won't be able to make the final call until they get inside). My choice was to go with the Ross due to my age and my active lifestyle. The statistics for the Ross procedure have certainly improved over the years as the techniques have improved. I'm not telling you to go with the Ross, but just curious why your surgeon said he wouldn't suggest it. If you are interested in the Ross, I would suggest speaking with a surgeon that does alot of them...and not someone that is uncomfortable doing them. Two that come to mind are Dr. Stelzer in NY and Dr. William Ryan in Dallas, TX (who did my surgery). There are others, but I spoke with both on the phone and both were willing to quickly review my records at no cost. Just a thought.

I wish you the best with your valve choice!

 

[Philip B]

Opinions

Opinions

Like others, I agree with Mike's comments regarding seeking second opinions. It was obvious when I saw the results of my CT scan that I needed surgery fairly quickly. Perhaps I was lucky, because the surgeon my cardiologist recommended and I "clicked" immediately. Both my wife and I felt extremely comfortable with his recommendations and the rationale he based his recommendations on.

We frequently see posts from individuals who are totally freaked-out about taking coumadin. I've been on the drug for over a year and I maintain the same active lifestyle that I enjoyed prior to surgery. I've always tried to be careful around sharp objects although an accident involving a sharp object actually alerted me to the fact that I needed AVR surgery and an aortic aneurysm repaired quickly. I liked wine and beer before I had surgery and I didn't like to drink in excess. I still like wine and beer and still don't like to drink in excess.

Coumadin has resulted in some changes in my life. I take a couple of pills every day and check my INR with a home monitor machine once a week. The test usually takes less than five minutes. These changes are rather small and don't present any inconvenience. Oh, there has been one other change. Some of my employees jokingly refer to me as "Tinman" because of the sound my St. Jude mechanical valve makes (they've borrowed gear from the school nurse from time to time to listen to the valve click).

Successful AVR surgery will result in some life changes. You'll probably feel better and you'll probably live longer. I suspect most of the folks here don't mind these kinds of changes.

-Philip