Any Thoughts on Aortic Valve Repair

[PWolff]

Hello,

My name is Patrick Wolff. I am 34 years old and have aortic insufficiency (regurgitation) due to a biscupid valve that has been monitored for almost 13 years now. Recently my measurements have gotten into the "severe" range (6.6 and 4.1 LV measurements with 60% or less ejection fraction), and my cardiologist is recommending that surgery is on the horizon soon. So now I have to start thinking about which procedure, which valve, which surgeon, and when to do it... Ugh.

Now that I've started researching the whole thing, I've discovered that in addition to the various valve replacement options, there is also the possibility of having the valve repaired. Through reading the *incredibly helpful* Peter Easton string about selecting a valve, I saw something about valve repair, and the surgeon Dr. Tirone David, in Toronto. So I looked him up on the Web and sent him an email.

I emailed Dr. David Sunday afternoon, and incredibly by Sunday evening he sent me this response:

Dear Mr Wolff,
Aortic valve repair is the probably the best option for patients with aortic insufficiency and bicuspid aortic valve as long as the aortic cusps are of good quality and the insufficiency is caused by prolapse of only one cusp.

In order to determine if your aortic valve is repairable, you would have to have a transesophageal echocardiogram and the cardiologist has to carefully interrogate each component of the aortic root, i.e. in addition of obtaining multiple views of cusps, the diameters of the aortic annulus, sinuses of Valsalva and sinotubular junction should also be measured.

If you are willing to undergo this test I would be pleased to review it and give an opinion re. repairability of your valve.
Tirone David, M.D.

Well, I was really floored by such a detailed and helpful response so quickly to someone he had never met! I sent this to my cardiologist and she agreed that I should have the TEE so we could send the results to Dr. David and see what he says.

My question to anyone out there: Have you heard of or researched aortic valve repair? (And for good measure, do you know anything about Dr. David? He seems to have a good reputation, but I know little else about him.)

Also, my former cardiologist recommended my case for aortic valve repair to Dr. Cosgrove at Cleveland. Cosgrove said I had a "70% probability of successful repair"(with flesh valve replacement if the repair was unsuccessful -- he didn't say anything about what valve to replace with) with a 15% probability of reoperation within 10 years. But Cosgrove never asked for a TEE! Strange... Does anyone out there know more?

By the way, let me tell you that this Web site is really incredible! I could never have imagined that there was such a wonderful and vibrant community for people who need to have their heart valve replaced, but I am so grateful you are all here!

 

[Nancy]

Hi Patrick-

Welcome to the site. You've got lots of built-in cyber friends who know what you're facing. It makes it so much easier when you know people who've been there and done that.

It sounds as if you have a good leg up on your researching. If there's a possibility of repair. and your surgeon and your own circumstances will allow that, it's a great option.

I wish you well in your information gathering. If you read lots of past posts, you'll have a college degree in cardiothoracic surgery from the patient's point of view, it helps with the presurgery jitters. Knowlege is power.

 

[ALCapshaw]

hello Patrick,

I remember reading a severalf posts about Dr. David a year or so ago. All were favorable.

I believe Dr. Cosgrove favors the Bovine Pericardial Valve for his tissue valve replacements. He is world reknown as is the Cleveland Clinic (the #1 rated Heart Hospital).

Best wishes for your selection.

'AL'

 

[PWolff]

Thanks Nancy and Al for the kind comments. Nancy, I couldn't agree more that I'll have a "college degree" in being a heart valve patient after reading through this Web site!

I'm going to find out more about aortic valve repair in the next few weeks, and I'll update this post with what I find out when I do. I certainly like the sound "repair" if it's possible, but I guess it will all depend on the details.

 

[Marty]

Aortic Valve Repair

Aortic Valve Repair

Hi Patrick, I note you are from DC. It is great that the surgeon from Toronto answered your query so promptly and so well. I would like to give you a couple of names of great heart surgeons in our area you may want to consult....... Paul Corso at Washington Hospital Center and my man at Inova Fairfax..Ed Lefrak. Prior to my mitral valve replacement now over 4 years ago , Lefrak did get a TEE on me and found my mitral valve in too bad a shape to repair.

 

[PWolff]

Lessons Learned so Far

Lessons Learned so Far

Folks,

I'd like to share some of what I have learned so far. This Web site has been such an extraordinary resource for me to learn more about the options, pitfalls, etc. of my treatment and I'd like to share what I'm finding out from time to time.

My Diagnostic Context

I have pure AI (aortic insufficiency), caused by BAV (bicuspid aortic valve). My AI is now in the "severe" range, with my LVIDd = 6.6cm and my LVIDs = 4.1cm. I have trace mitral regurgitation, but this is not considered an issue right now -- it's all about the aorta. My aortic root is considered normal. I am basically asymptomatic. I say "basically" because I sometimes feel lightheaded ("presyncope" as they say -- don't doctors have a flair with words?) and sometimes feel a "hard" heartbeat, or a rapid heartbeat. But while these things are all unpleasant and a little creepy, the doctors basically don't seem to care. The main point is that I have no exercise intolerance (I jog several times a week both for health and to monitor my exercise tolerance), and I've never passed out ("syncope"), so I guess I'm "asymptomatic" as far as they're concerned.

So bottom line: I'm still okay but now have to start thinking very seriously about surgery, which looks inevitable in the near future at this point.

The Options

From what I understand, the basic surgery options are:

* Ross Procedure
* Valve Repair
* Valve Replacement

And here is what I have so far learned about each...

Ross Procedure

Originally this was the procedure of choice of my cardiologist. She said it "made a lot of sense" to her, because the pulmonary valve is so much less important than the aortic valve, and the RP seems to maximize the quality of the valve replacing the aortic valve.

BUT: I found a really important article that casts doubt on the wisdom of the RP in BAV patients: J Thoracic Cardiovascular Surgery 1999; 118: 588-96. This article suggests that having BAV is a strong predictor of developing other damage to the heart wall, even if tests don't indicate a problem at the time! This leads to pulmonary autograft dilation in some patients undergoing the RP. Discussion comments by surgeons at the end of the paper by surgical experts in the RP such as Dr. David and Dr. Elkins indicate the importance of this point. It is not fully understood yet, but does seem to indicate an important thing for BAV patients considering a RP to bear in mind.

Valve Repair

I'm still pretty ignorant about this. I haven't learned anything more since the email response from Dr. David that I posted a week ago. It looks promising (I'm having a TEE this week to see whether I'm a good candidate) but I haven't found any more information. Anyone know anything else of importance here??

Valve Replacement

Still haven't gotten "down dirty" into the details of which type of valve, which make of valve, etc. But a BIG THANK-YOU to Arlyss for posting a really important article! That article is from Ann Thorac Surg 2002; 74: S1773-6. Because BAV patients are at greater risk for developing damage to the heart wall -- EVEN IF TESTS SHOW NO PROBLEMS AT THE TIME -- they found that patients with BAV were at greater risk of developing ascending aorta aneurysm 5-15 years after AVR, with considerable mortality implications. Of course, everything depends on the test design; they compared 50 BAV patients to 50 TAV patients who were very similar except for the BAV/TAV distinction. That's not a big number, but the contrast was so stark (very low p-value which means very high statistical significance) that unless there was some kind of systematic bias that they didn't account for, it's very meaningful.

Fortunately, they have a simple suggestion: prophylactic replacement of the ascending aorta, even in patients with normal ascending aorta (like me), and definitely in patients with any sign of trouble. They assert that this extra replacement adds no significant risk (ANYONE KNOW WHETHER THIS IS TRUE??), while preveneting the significant complications that could arise otherwise. From what I could glean, a big danger point is that it is very hard to catch the complications that arise from the ascending aorta because they don't always show up on the tests.

This is definitely a big attention-getter for me, and I'm going to raise it with my cardiologist in a few weeks!

Any thoughts?

Patrick

P.S. Thanks Marty for your suggestions on surgeons in my area!

 

[Nancy]

Hi Patrick-

Sounds like you've been doing lots of homework. Good job!

Your info. on the possible aneurysm complications are very interesting and it's something you really need to hash out with your cardiologist and surgeon. It would make sense to get that taken care of at the same time, even though you don't need it now.

I'm wondering if insurance companies would view that as something they would question because it's not a problem right now. If the docs balk at the idea, maybe you should ask them this question.

 

[Arlyss]

Regarding Your Bicuspid Aorta Research

Regarding Your Bicuspid Aorta Research

Hi Patrick,
So glad that you are reading and researching all aspects of your condition. There are two additional papers that were helpful to me and that I will post in the resources section of this site. One of them is a paper by a cardiologist that describes two young men with bicuspid aortic disease. Both developed life threatening aortic aneurysms. One had had his valve replaced 11 years earlier, and the other still had his original bicuspid valve. This paper is what first helped me understand things when my husband's aneurysm was discovered. (He had also had his bicuspid aortic valve replaced 11 years earlier.) It was a tremendous shock to be told he had an aneurysm because we had never been warned that he was at risk.
My husband is like the 3 fortunate people in the study from Milan who had ascending aortic aneurysm surgery before anything happened to them. But I can well understand why, given today's technology and the relative safety in the hands of an expert aortic surgeon, the recommendation is to deal with both the BAV and the aorta together. It avoids a second major open heart surgery later, and prevents sudden death due to aortic dissection or rupture. Those are very strong reasons. If my husband were again where you are today, knowing what he knows about his own condition, he would clearly want one surgery to deal with both the valve and the aorta together.
However, the surgery needs to be done by very expert hands. (Statistics on the outcomes of cardiac surgery should be made available to you, both mortality and morbidity.) If you would like my thoughts regarding some of those experts, please just let me know.
Best wishes to you, Arlyss

 

[PWolff]

I'm taking you up on your offer

I'm taking you up on your offer

Arlyss,

Many thanks for your very helpful (and hopeful) posts. I have found the resources you posted and have saved/downloaded all of them.

I would really like to discuss with you your thoughts on who that pair of "expert hands" should be. Can you email me at [email protected]?

I am now planning surgery within 2-3 months. Dr. Cosgrove, at Cleveland, was the first surgeon to review my files. I have scheduled consults with:

Tirone David (Toronto)
Alan Speir (Fairfax)
Paul Stelzer (Beth Israel, NY)
Duke Cameron (Johns Hopkins)

Any thoughts you have on these five people, plus anyone else, would be most appreciated.

Thanks,

Patrick

 

[pegne]

Know a Little

Know a Little

Dear Patrick, I am a forty one year old surviver of four heart surgeries. My problems were diagnosed when I was 6 years old. I have aortic stenosis. When I was a child I underwent many catherizations. At the age of 18 I had my first open heart surgery at Wylers Childrens Hospital (part of the University of Chicago Hospitals). I had a valve repair. The next twelve years were pretty much uneventful as far as my heart goes. At the end of 1991 I started getting symptoms again. I went to my cardiologist and he did another cath. He told me I needed another valve repair. I had this one at Rush Presbatatian St. Lukes Hospital in Chicago. Again they repaired the valve. In 1995 I became symptomatic yet again and this time my cardiologist sent me to The Cleveland Clinic and Delos Cosgrove. He decided to do the Ross Procedure on me. After surgery I developed major complications. I ended up being there (about 400 miles from home) for 20 days. I was then discharged with a PICC line in my arm to feed me antibiotics 4 times a day for 6 weeks upon returning home. I was finally beginning to feel myself again when I began having pain in my lower left side area. My doctor sent me for a CT scan. I had a pnemothorax the size of a liter bottle in the lining of my left lung. In Oct. of the same year I had to have a thorocotomy to remove the pnemothorax. Later I found The Cleveland Clinic discharged me knowing it was there. After that surgery I did pretty good for a couple of years. In 1998 I began to have the symptoms that I knew all to well. My doctor sent me back out to Cleveland Clinic. The RP I had in 1995 had failed. Nobody knew what to do with me. I was then sent to Mass. General in Boston. The doctor there wasn't sure what to do either. We decided to go home and wait for a decision to be made. My local cardiologist called me in and told me he thought I should go to see a Dr. Tirone David in Toronto. From what I understand Dr. David was reversing these failed RP. We chose not to go out of the country. Finally I made the decision to go back where it all started The University of Chicago hospitals. There I met Dr. Jeevanandum. This man is known for working on people who would otherwise be considered inoperable or transplant recipients. I was being considered both. In 1999 I had a 4th open heart surgery. I was out of the hospital is 5 days. Dr. Jee replaced both of my valves (aortic and the now damaged pulminary) with human valves. I had to have mitral valve repair. To date I feel pretty good. I know I sound like I have a chip on my shoulder about Cleveland Clinic. I do. That place was a nightmare for me. I also know that I have had the best doctors in the country. Dr. David is supposed to be excellent. I chose not to go there. I don't think people really know how good the U of C H are. They are rated in the top 10 in the country. Right now the only thing I'm on is Lasix and pottasium. I'm so glad I decided to stay in my own back yard. I hope this helps. pegne

 

[Nancy]

Hi Pegne-

I wanted to welcome you to the site. You've been through so much and I'm very glad to hear that you are finally feeling better.

There is so much information on this site and I'm sure you'll be a big help to many folks here.

My husband has also been through a tremendous amount and the site has helped me to help him more than I can say.

He chose to stay in his own backyard for two of his valve surgeries and his two thoracotomies. We have a very fine cardiothoracic surgeon here. He wasn't just a number here. They really cared and wanted to help him.

Hope to see lots of your posts.

Take care,

 

[John Cochran]

Hi Patrick,
I am having a deja vu experience reading your posts--I, too, did a ton of research when I discovered that BOTH my son and I had bicuspid aortic valves (my son Clay is 30, and I'm 51). We both had surgery within 6 months of each other, but with different procedures. Clay had his bicuspid aortic valve repaired successfully. He also had a TEE to determine the exact situation with his valve cusps, which helps determine the surgical plan. Together with his surgeon, Dr. Northrup (Minneapolis) we reviewed all of the options, from Ross Procedure to homograft to mechanical valves to repair, and repair looked like the very best option for someone his age. So, last December he had his surgery which worked out very well. The big advantage to a repair, of course, is that you end up with your own tissue and no need for blood thinners. Clay will likely have to have another surgery (in his 50's?) when his bicuspid valve begins to calcify, as almost all bicuspid valves eventually do.

I was not a candidate for repair, since my aortic valve was severely calcified. I looked at all the options, but just last January the Cryolife aortic SynerGraft homograft became available, which is a decellularized tissue-engineered homograft that is believed to repopulate with your own cells within a year. The benefit to a homograft was that the ascending aorta is connected to it, so when implanted with a full root replacement, many of the future issues with aortic aneurisms, dissection, etc. are taken care of with this one surgery. I'm now 6 months post-op, and in the words of my surgeon, I'm doing "outstandingly well."

Pegne, I haven't yet welcomed you to our little village here, so welcome! I have noticed you've mentioned that lots of Ross Procedures fail. I recall reading that Cleveland stopped doing them for a while due to poor results, but it ended up being one surgeon (not sure who) who seemed to have the bad results. I believe they are now doing them again. I do know some Ross Procedure recipients who have had phenomenal success.

Patrick, if you'd like to talk to my son about his experience with aortic valve repair, e-mail me and I'll give you his phone number...I'm sure he'd be happy to share his experience with you.

[email protected]

Best wishes,
John