Choosing a Surgeon: Please Advise

[Sooner_Crusier]

At 39, having had aoritc stenosis and mitral vavle disease since birth, I have been advised by my Cardiologist that I can expect surgery sometime in next 5 years. SHould I just go with the flow and accept the surgeon my HMO sends my way, or should I be more proactive.

How do I make sure my surgeon is not going to kill me?

 

[tobagotwo]

Experience. The surgeon must be very experienced and should be doing at least a hundred "valve jobs" a year. As you were born with a special situation, you should be especially careful.

You might well want to look into a pediatric thoracic surgeon, who would be more familiar with congenital cardiac configurations. Such a surgeon has had to make changes and repairs with tiny, imperfect parts in much smaller spaces than your chest.

Best wishes,

 

[StretchL]

Be ProActive!

Be ProActive!

Hi, Doug, and welcome to the forum. There are a lot of great people on here who have been through/are going through/will go through what you (and I) will soon experience: Open Heart Surgery.

First and foremost- OHS will very likely not kill you. If you are otherwise healthy, your chances of dying on the operating table are miniscule, and you'll probably be more healthy after surgery than you are now.

If you know a lot about your condition, you might want go to the "Risk Calculator" on the web site of the Society of Thoracic Surgeons. It "allows a user to calculate a patient’s risk of mortality and other morbidities, such as long length of stay and renal failure. The Risk Calculator incorporates the STS risk models that are designed to serve as statistical tools to account for the impact of patient risk factors on operative mortality and morbidity."

Go to http://www.sts.org/sections/stsnatio...riskcalculator, put in your data, and await your fate. You may come up with a 99% chance of a successful procedure. Not too shabby.

I was diagnosed as an infant with a bicuspid aortic valve. My cardiologist told me a year or so ago that we might be looking at surgery sooner rather than later, and a few months ago said that now is the time. I have a Ross Procedure scheduled with Dr. Paul Stelzer on November 7. (Coincidentally, Stelzer first performed the Ross Procedure while he was at the University of Oklahoma in 1986.)

It's in my nature to analyze options and take charge of a decision making process. This and my familiarity with my condition over the years led me to doing extensive research before deciding on a bioprosthetic valve (bovine, porcine, or human), a mechanical valve, or a Ross Procedure, where the surgeon excises the diseased aortic valve, moves the healthy pulmonary valve to the aortic position, and implants a human donor valve in the now vacant pulmonary position. There is also sometimes the option of a valve repair. I did not research this procedure at all, as I'm not a candidate for it.

You probably already know about the advantages and disadvantages of the various options: bioprostheses will calcify and a re-op will likely be necessary in 10-15 years, although new generations are supposed to last longer. Mechanical valves will last forever and millions have been implanted, but they require lifelong anticoagulation therapy (Coumidin) and, eventually, may also require a re-op, as you can see from a recent post by Christine, here: http://valvereplacement.com/forums/showthread.php?t=18014 The Ross Procedure is a much more technically difficult surgery, and requires a very experienced practitioner. There is not nearly as much long term study of its outcomes, although mid-term it seems to provide near-native hemodynamics and does not require lifelong coumidin therapy. It may require re-op long term, but there's not enough data on the procedure to say how likely this is.

There is a debate on this board as to the implications of anticoagulation therapy, ie. taking Coumidin. Many here say it's not a problem at all, and that the periodic blook tests necessary in order to maintain the proper dosing are minor inconveniences, if that. The Cleveland Clinic, one of the largest and most prolific heart centers in the country, seems to believe, and one of their surgeons has written, that the risks of re-operation (with a bioprosthetic valve) are less than the risks of lifelong Coumidin therapy (with a mechanical valve.) They implant about 65% bioprosthetic valves, 35% mechanical, and I forget what the last 5% involves. Probably the Ross and who knows what else.

If you're interested, I have posted a lot of what I have found in my research into my own surgery on my web server. You can download it at http://stretchphotography.com/avr. A lot of those documents are about the Ross, but you may be particularly interested, at this stage of the game, in the Cleveland Clinic documents about "Caring for Patients with Prosthetic Valves," and, especially, "Choosing a Valve." It's the 5th document from the top.

Good luck in your decision making process. I know I speak for many on here when I say I'm looking forward to hearing more about it!

Peace-

 

[ALCapshaw2]

It wouldn't hurt to start interviewing Surgeons NOW.

Write down all of the questions that come to mind, especially regarding how much experience they have had with congenital valve issues. If your issues are complex, you may even want to look at larger hospitals that do valve replacements on the more difficult cases on a regular basis (e.g. Cleveland Clinic, Mayo Clinic, Texas Heart Institute, etc.)

Once you find one you are comfortable with, let the SURGEON decide on the best time to procede. Surgeons like to operate BEFORE any irreversible damage is done to the heart walls and muscles.

'AL Capshaw'

 

[StretchL]

You might well want to look into a pediatric thoracic surgeon, who would be more familiar with congenital cardiac configurations.

Hi, Tobago...

I've never heard this. My condition is congenital, meaning I was born with it, but the anatomy is now that of an adult. I've never been directed toward a pede surgeon. Can you share more about your reasoning with this? Thanks.

 

[Sooner_Crusier]

No Longer Alone!

No Longer Alone!

You all are great!

I've never known anyone else with my disease.

It's not just a disease, the effects on my life have been monumental.

WIth congenital disease, you always wonder what might have been.

They actually let me play football in school in 9th grade until I passed out while lifting weights. I always wonder what my life would have been like if I had been able to be "normal" and play high school ball. I was the quarter back.

I have always had low energy levels and needed more rest than the next guy. Just walking up stairs winds me a little more than others.

I'm actually looking forward to the surgery because everyone tells me I will feel better than I do now.

There is also the monitary issue.

I am currently taking over $150 worth of meds a month. After insurance! This has taken a great ongoing toll on my family finances. I'm sure I'm not alone.

As a high school teacher with four children, we have learned to live on Ramen noodles and peanut butter and jelly sandwiches.

And finally, the good news.

I have a totally unique view of life.

We only have today!

I don't take anyone for granted. Every moment is priceless. I never allow my loved ones to leave me without letting them know how much I love and appreciate them.

I'm not so sure "normal" people see life as so fleeting.

Best wishes to you all!

Thanks for being there for each other.

Doug

 

[Mary]

Doug,
Have you looked at the ACHA (adult congenital heart association) site. If not, here's the link.
http://http://www.achaheart.org/for_members/
I'm glad that you've found us.

Stretch,
You might read some of Burair's (Papahappystar) posts about his Ross Procedure. He made the decision to go with a pediatric surgeon, Jan Quaegebeur, about the same time I was consulting Dr. Stelzer.

 

[Lynlw]

Hi Doug, welcome,
My son Justin,is the the one w/ heart defects, first if you want to talk to lots of people that have dealt w/ this their whole lives, like you, I agree w/ Mary's suggestion to also join the ACHA altho her link isn't working, http://www.achaheart.org/index.php
you will have to register to get to the message board, but it is free, they also have alot of resources. before i can offer any suggestions about surgeons, i was wonderring if you have had any interventions for your CHD and also if the cardiologist you are seeing is one that specializes in Adults w/ CHD, if not you really should there is a list of ACHD specialists at ACHA, and if you have had previos heart surgeries you really should be looking at surgeons that specialize in adults w/ CHd, the recomendation use to be if you have CHD go to a pediatric surgeon no matter your age, but with so many of the "heart kids' making it until nice old ages, the need for doctors that specialize in Adults w/ CHD and all the issues that can go along w/ it was realized so there are starting to to be more clinics to go to, not only w/ doctors, but the nurses, ultrasound ect all have expreience w/ CHD
Stretch, I'm not sure why noone recomended you should go a adult CHD surgeon, my guess is because really most people here besides the people who need valves do to endocarditis, radiation and things like that really have CHD, when i first joined here I asked if people went to CHd docs and I could be wrong, but I guess if it is "just" a valve that needs replaced and otherwise the heart is "normal" and hasn't had multiple surgeries, that surgeons that specialize in adults w/ valve replacement are the docs to go to. BUt if you had surgery as a child and have old internal scars and patches in rerouted blood paths then you really should go to a doctor that has lots of experience w/ CHD , Lyn

 

[StretchL]

Stretch, I'm not sure why noone recomended you should go a adult CHD surgeon...

No, Lyn... no one ever recommended that, as an adult, I should see a pediatric surgeon, that's what I was saying.

 

[Lynlw]

No, Lyn... no one ever recommended that, as an adult, I should see a pediatric surgeon, that's what I was saying.

I understood what you were saying, but the recomendation for adults who have congenital heart defects to see a pediatric surgeon is alittle out dated, Since there are now surgeons that specialize in adults w/ CHD that is who should be recomended. Some CHD surgeons operate on both children and adults, while others just operate on children, and I believe now there are some that specialize in just adutls w/CHD, which is alot different than a doctor that just operates on adult issues, like bypasses ect, unless i just made it more confusing, lyn

 

[tobagotwo]

People who have only the bicuspid aortic valve (BAV) issue, which represents the vast majority of these cases, don't need a pediatric or specialty surgeon. Their surgery is generally quite straightforward, and their suregeons are more than capable of dealing with their valves as a matter of course. This is generally also true of adults with BAV and aneurysms.

I suggested this course of action to Doug because he has had AS and a mitral valve condition since birth, not just a condition like BAV that can cause that problem later on. That is something of a flag that there might be other anomalies as well. Frequently, divergent cardiac configurations come in common groupings of congenital issues. As a fairly common example, if someone has BAV and an aneurysm, it's often important to stabilize the aortic root for their aortic valve surgery, as it may well expand otherwise.

("StretchL:" Based solely on your nickname, I would suggest you discuss with your surgeon the possiblity of stabilizing your aortic root during the surgery, as root expansion appears to be the most common cause of Ross Surgery failure, particularly among BAVs. Also, be sure you are checked for aneurysms before you go in for surgery. These are items a good, experienced thoracic surgeon can deal with, and don't require a congenital specialist in my view.)

Another condition that might go along with certain congenital problems is coarctation, a "pinched" area of the ascending aorta. It seems it would be good to have someone in the fray with Doug who would be able from experience to determine if there are other concurrent formation issues they should also be looking for, based on their experience. I believe Doug may be able to convince his HMO cardio to help him seek that kind of consult within the boundaries of his insurance, if they don't have such a person in their group.

Understand, Doug, that I am not a doctor. I am only pointing this out as a result of trends that I believe I have seen on this forum and in my readings. I am not saying that you do have any other issues than what is immediately apparent. It only seems prudent in my opinion that a professional with this type of experience be consulted.

Best wishes,

 

[dcpickle]

SHould I just go with the flow and accept the surgeon my HMO sends my way, or should I be more proactive.

Douglas,
(I'm going to hit this one into the cheap seats...)
Be Proactive!
It's your heart, not the HMO's!
You should begin right now researching your options regarding the different choices for valve replacement. Luckily, they will all save your life, but there are differences between a tissue valve vs. a mechanical valve vs. a Ross Procedure. Then, when you have an idea of what you want, begin to contact surgeons. Ask questions about their experience, i.e. how many similar procedures have they done, especially if you decide you'd like to have a Ross Procedure, which, naturally, I recommend you consider. Since you have mitral valve issues, your case could be special enough to seek out a surgeon who has experience with aortic replacement with mitral repair/replacement (or whatever is needed.)

Another recommendation I have is don't be afraid to go out of town to get the best surgeon. OKC has top-notch medical care, but if you feel the best surgeon is somewhere else, it's worth it go go out-of-town. I had to go to New York City for my surgery and it worked out beautifully. I know insurance could alway be an issue for that, but try anyway.

I'd say you've come to the best place to begin your research. Good Luck! It'll all be alright!

BTW, don't put any confidence in that "5 year" figure. It could be needed much sooner, like it was for me.

David
Another Okie (temporarily forced to live in Atlanta, but itching to get back home)

 

[StretchL]

(Based solely on your nickname, "Stretch," I would suggest you discuss with your surgeon the possiblity of stabilizing your aortic root during the surgery, as root expansion appears to be the most common cause of Ross Surgery failure, particularly among BAVs. Also, be sure you are checked for aneurysms before you go in for surgery. These are items a good, experienced thoracic surgeon can deal with, and don't require a congenital specialist in my view.)

Thanks for the clarification, TB2.

It is my understanding that Stelzer *always* stabilizes the root with a piece of Dacron felt, for just the reason you mention above.

Both surgeons whom I've met with personally said that they would also reduce the size of the ascending aorta, which a CT showed to be 4.8cm, I believe, about a month ago. Both also mentioned the same couple of methods for doing this, and both discussed it as routine in a case like mine: stenotic AV with dilatation of the ascending aorta likely resulting from the pressure gradient caused by the stenosis.

 

[lilbit]

Welcome I personally did not go with the HMO hospital that my cardio suggested. I told him I had my heart (lol) set on going to UCLA since I was a kid. My HMO did cover it however it took 2 extra months of waiting before I could have the surgery do to the referral process. But in the end I got to go where I wanted to go. And I am so happy with my choice. So you may want to see if you have the option to pick another hospital to do your surgery. I would definetly do your research on the surgeon that will do your surgery. Because you want to feel confident since your life is in his hands. This site and research really put my mind at peace. Good Luck....

 

[tobagotwo]

StretchL...

I should have gone back and familiarized myself with your posts before commenting. You have Stelzer - no need for me to chip in my two cents at all. He da man...

You have some connective tissue issues, which are what allowed the aneurysms to form from the pressure. Partly because of this, remember there is a possibility that your pulmonary valve might turn out to be unsuitable for use, which they won't know until they get there. Your concern is mostly around whether you have myxomatous tissue in that valve or the aortic attachment area. That might make a mechanical valve the best choice, as it would have the least likelihood of causing the site to be disturbed again later. If anyone can determine that in situ, it would be Dr. Stelzer.

Sooner_Crusier...

I assume that when they go in there, they will replace both the aortic and mitral valves, and fix it all while they're there.

As you already have two valves in the mix, a Ross Procedure would involve a third (the donor pulmonary valve). This might make you a less viable candidate for the Ross.

As far as other alternatives, at your young age, you will want the results to last as long as possible. Tissue valves do not last as long in younger people (they are more chemically reactive), and they don't last as long in the mitral position as they do in the aortic position. This should be a consideration if you are choosing a valve type. So should the fact that if you were to have your tissue mitral valve replaced in ten years, it would only make sense to replace your aortic valve again at that time, even if it's still viable. So your replacement would be a double-valve operation again. I usually lean toward tissue valves, but this would not be my choice here, if it were me.

The exception to the above would be if they are confident that they can repair the mitral valve. Then you're effectively back to a two-valve involvement. That might open the door again for a Ross. But it would be a very long procedure.

Hope this discussion doesn't make the confusion worse.

Best wishes,

 

[PJmomrunner]

Re Doug:
It seems an assumption has been made that Doug will have double valve replacements when the time comes. I'm curious as to why a repair, rather that a replacement, of the mitral valve is not the assumption. I ask because the Cleveland Clinic states on their website that 19% of their overall heart valve surgeries were isolated (no CABG) MV repair while 3% were isolated MV replacement. https://www.clevelandclinic.org/con...d=1&guid=839c3e7f-b24d-4931-a887-65f17f0ed582 They are repairing 95% of leaky MV's. https://www.clevelandclinic.org/con...d=1&guid=839c3e7f-b24d-4931-a887-65f17f0ed582 Is it that CC is so far ahead of the pack and no one else is repairing at that rate? Is it that the time involved in an MV repair precludes also replacing the AV in the same operation? The prognosis for an MV repair is "excellent," and I think I read some somewhere, possibly even lifelong.

Re Stretch:

Both surgeons whom I've met with personally said that they would also reduce the size of the ascending aorta, which a CT showed to be 4.8cm

Do they plan a reduction (aortoplasty?) instead of a replacement because it is assumed they will be reoperating and will replace the aorta in the future? If that's not the case, I don't understand why it's okay to reduce the size of a myxomatous aorta and leave it in place. I get that reducing the size reduces the pressure on the aortic wall, but isn't the tissue still going to be fragile? Isn't it a gamble how long it will hold?

 

[tobagotwo]

P.J....

I did mention that possibility:

The exception to the above would be if they are confident that they can repair the mitral valve. Then you're effectively back to a two-valve involvement. That might open the door again for a Ross. But it would be a very long procedure.

 

[PJmomrunner]

Bob...

I understand, but why would it be the exception and not the rule?

 

[tobagotwo]

You are quite right, and I agree that in most cases, repair of a regurgitant mitral valve is the hoped-for choice.

Doug hasn't mentioned anyone discussing a repair with him, which would seem to be likely, if it were being contemplated. As it's been a problem for a while, I have to wonder if there is calcification as well.

Best wishes,

 

[PJmomrunner]

Oh, I see. Thanks for the clarification--sorry to belabor the point.