Dilemma

[Jennie]

Folks,

I'm back from my "second opinion" meeting with a doc at Cleveland Clinic. (I wish I had known that JenniferO was there....) Now I am in a dilemma.

Mayo Clinic tells me: Do surgery now (next month or two) because of the severe regurgitation and workload on the heart. A repair of my aortic valve looks doubtful, but if possible, it would consist of sewing up my two partially-fused cusps to make a nice bicuspid if the leaflets are in good shape. Plus maybe some dacron to deal with the aortic aneurysm, if the actual tissue looks weak (the aneurysm could just be due to the misdirected high-pressure flow). Backup would be the new CryoLife aortic homograph (processed by cryopreserving so it's still "living", and stripping of donor cells to cut down on "rejection" and theoretically prolonging deterioration of the valve). This is just released by FDA, now available at Mayo Clinic and another place in Oklahoma. The surgeon said it's at least as good as a regular homograph. He's on the committee that decided it was ethical to offer this at Mayo without doing a trial. Doc says valve is still under evaluation, everything looks good in theory but there could be a structural problem that hasn't surfaced yet, who knows. Of course, I could go with a regular homograph. Surgeon seems quite competent, but of course he's not Cosgrove, king of repairs(!)

Cleveland Clinic tells me: Do surgery within the year, nothing's going to break right away, my aneurysm isn't going to blow or anything. Of course, Cosgrove is too busy in the OR to have a chat, but the doc said "50-60-70%" chance of repair by him, and that the repair would consist of taking a chunk out of my big two-cusp leaflet to tighten up the scene, maybe scrape off some of the calcification on the edge of the cusps too. Plus maybe some dacron for the aneurysm, again, if the tissue looks weak. For a backup, he doesn't recommend the new CryoLife valve, it's too new, he is more conservative, go with a regular homograph. He cited miscellaneous mechanicals that looked great at the beginning, but time showed that many of them aren't the best, same with bovine/porcines that don't last terribly long. Of course, they don't have the aortic CryoLife available to them yet, so maybe he hasn't studied up on it yet. I don't know if they do the other CryoLifes there or not (the mitral and pulmonary). Says to go with Cosgrove or Lytie.

A note on the CyoLife being a new thing: Of COURSE the mechanicals and non-human tissue valves don't have the best hemodynamic function, as they are not human valves. But, even though the CryoLife is new, it's still a homograph, right? So, comparing them to a bovine or a particular failed-the-time-test mechanical doesn't tell me much, that seems like comparing apples and oranges. I want to know how it compares to a regular homograph....

So, it seems like I can go with Mayo, with a very competent surgeon who has done repairs but isn't the Top Dog Whiz Kid, with an exciting but not time-tested backup valve that could possibly last me longer than a regular homograph. OR, I could go with The Cosgrove, maybe more hope for a repair, and just a regular homograph as a backup.... Does anyone see my dilemma? POSSIBLY a better chance for repair at Cleveland, but POSSIBLY a better backup valve at Mayo. I don't want to make my decision based on a big name. And both places may find that I can't be repaired at all. And the "better backup" may turn out to be a dud. HOW do I go about deciding this sort of thing? As far as the timing, look, I pretty much need to do it soon, right??

A note on the repairs: To me it almost sounds as if the two places are talking about the same thing. One talks of sewing up the cusps, the other talks of doing a tuck on the cusps. I would think that the guy sewing the cusps would also take a bit of a tuck if necessary. One mentioned scraping off a bit of the calcified cusp edges if needed. Wouldn't the other guy do that too? So, are these guys talking about the same thing here? And if so, then it doesn't matter which guy I go to, right? I mean, the Mayo guy is at the #TWO heart hospital, so while he hasn't done thousands, he has done a bunch. So does my decision boil down to whether or not I want to chance it with the CryoLife?

So, talk to me. You guys are the only folks I know who have any concept of what I'm talking about....

-Jennie

 

[Ross]

Jennie I don't want to see you have such a difficult time choosing who does what. I'll give you my thoughts and ultimately, it's still your choice anyway, but here it goes.

I had a ruptured thoracic (ascending) aorta aneursym repaired by Dr. McCarthy at the Cleveland Clinic. If you look at his credentials, he is an import from Mayo to Cleveland.
http://www.clevelandclinic.org/staff/getstaff.asp?StaffId=920

Now my point, I think your going to get the same thing, no matter which facility you choose. I favor Cleveland myself, but that is me.
I don't think your going to have any lack of expertise, so to speak.

As far as your procedure choices, ask yourself this, "Can I do this again, in the future" if you go with the trial valve?

When I had my surgery, it was a major life and death decision made on Dr. McCarthy's part, not to totally repair my aortic valve. I had been on the by pass machine too long and he did what he could, at the time, to make my valve function as close to 100% as possible. The best he could do, after 2 attempts, was to leave it where I had a slight regurg and wait it out. I'm know at a 4+ severe regurg and I'm about to have surgery again.

I made it 6+ years like this, not saying that someone else would, but just to give you an idea, and now it's time to do something about it.

I hope I'm making a little bit of sense. If I'm not, just tell me, but I hope this helps you somewhat.

 

[Nancy]

Hi Jennie-

Decisions, decisions. They are so tough. My own opinion is that in either facility, they will do whatever needs to be done when they get into your heart i.e. stitching, tucking, reinforcing, cleaning the valve and generally looking around to make sure that they haven't overlooked anything. It sounds as if in either place you will have superb care. So if I were you or you were my family member, I would want you to go where you are the most comfortable, all things being almost equal.

As far as the CryoLife valve, there are a large number of posts here on it, and I would make it a point to read them all.

The future possibility of having another heart surgery if the trial valve turns out to be underperforming is something you should consider very, very carefully. Each time you have this done, it becomes harder and harder. My husband's had 3 of them. It's no picnic.

I wish you peace in your decision.

 

[LUVMyBirman]

Decisions are tough. Confident you will make the best one for yourself.

Beleive there was a post recently about the Cryolife valve you had referred to. You might want to see if you can locate it. There were complications.

Wishing you all the best.

 

[sylviayasgur]

hi jennie!
wow! sometimes too many choices are not an easy thing....these kinds of decisions are very difficult. i can totally empathize with you, as i am sure others here can too.
there was a fairly extensive thread in "new advancements", started by jim on 1/20/02. please check it out; may be helpful.
whatever your final decision, please don't ever feel like you may be making the wrong choice. there really is no wrong choice here. either way, believe me, you will be satisfied in the end.
furthermore, these are two of the most reputable institutions you are choosing between...either way you will win.
please let us know what you do decide, or just come back and chat/ bounce some more off of us.
we are all thinking about you as you go through this.
God bless and be well,
sylvia

 

[Jessica_B.]

Pheuw!

Pheuw!

So many difficult things to decide!!

If I understand you correctly they are basically saying the same thing; you need surgery, a repair might be possible but not to 100 per cent, valve replacement might be required. Nothing will break right now yes, but the situation is still time sensitive. If it were me (which it of course isn't), think I'd go with the Mayo clinic time frame and the conservative surgery approach of Cleveland.

Hope you can reach an informed decision on what would be the best strategy for you without too much anguish!

Good luck and all my very very best,

/Jessica

 

[Elisabeth]

Hi Jennie,

I´m just going do tell what I know about the Cryolife valves.
Cryolife produces "normal" homografts too, but I think you are meaning the Cryolife Synergraft. This is not a homograft, it´s made from a porcine valve and than treated in a special way as you described. My son got such a synergraft in Vienna on the 27 th of november and on the 5th of december he was dead. The day after they found out, that the reason was a rupture of the new synergraft!!! They don´t use this material anymore in Vienna after that had happened.

Best wishes

 

[Jessica_B.]

Elisabeth...

Elisabeth...

It broke my heart to hear about your son! I am at a loss for words but I will keep you in my prayers.

/Jessica

 

[Bill Hall]

Jennie - Good luck with this difficult decision. I just wanted to mention that they tried to repair my Aortic valve without success. I was on that heart/lung machine for 4 1/2 hours while they tried twice to repair. You may want to consider going directly to the homograph. I don't know availability of these homographs, since they are human, they may try to repair first in order to not use so many. A good question to ask.

 

[ken]

The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.

The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=11380096&dopt=Abstract

: J Thorac Cardiovasc Surg 1999 Jan;117(1):77-90; discussion 90-1 Books, LinkOut


Primary aortic valve replacement with allografts over twenty-five years: valve-related and procedure-related determinants of outcome.

Lund O, Chandrasekaran V, Grocott-Mason R, Elwidaa H, Mazhar R, Khaghani A, Mitchell A, Ilsley C, Yacoub MH.

Academic Department of Cardiac Surgery, Harefield Hospital, Middlesex, United Kingdom.

OBJECTIVES: Allografts offer many advantages over prosthetic valves, but allograft durability varies considerably. METHODS: From 1969 through 1993, 618 patients aged 15 to 84 years underwent their first aortic valve replacement with an aortic allograft. Concomitant surgery included aortic root tailoring (n = 58), replacement or tailoring of the ascending aorta (n = 56), and coronary artery bypass grafting (n = 87). Allograft implantation was done by means of a "freehand" subcoronary technique (n = 551) or total root replacement (n = 67). The allografts were antibiotic sterilized (n = 479), cryopreserved (n = 12), or viable (unprocessed, harvested from brain-dead multiorgan donors or heart transplant recipients, n = 127). Maximum follow-up was 27.1 years. RESULTS: Thirty-day mortality was 5.0%, and crude survival was 67% and 35% at 10 and 20 years. Ten- and 20-year rates of freedom from complications were as follows: endocarditis, 93% and 89%; primary tissue failure, 62% and 18%; and redo aortic valve replacement, 81% and 35%. Multivariable Cox analyses identified several valve- and procedure-related determinants: rising allograft donor age and antibiotic-sterilized allograft for mortality; donor more than 10 years older than patient for endocarditis; rising donor age minus patient age, rising implantation time (from harvest to aortic valve replacement), and donor age more than 65 years for tissue failure; and rising donor age minus patient age, young patient age, rising implantation time, and subcoronary implantation preceded by aortic root tailoring for redo aortic valve replacement. Estimated 10- and 20-year rates of freedom from tissue failure for a 70-year-old patient with a viable valve from a 30-year-old donor and no other risk factors were 91% and 64%; the figures were 71% and 20% if the donor age was 65 years. The rates of freedom from tissue failure for a 30-year-old patient with a 30-year-old donor were 82% and 39%; the figures were 49% and 3% with a 65-year-old donor. Beneficial influences of a viable valve were largely covered by short harvest time (no delay for allografts from brain dead organ donors or heart transplant recipients) and short implantation time. CONCLUSIONS: Primary allograft aortic valve replacement can give acceptable results for up to 25 years. The late results can be improved by the use of a viable allograft, by matching patient and donor age, and by more liberal use of free root replacement with re-implantation of the coronary arteries rather than tailoring the root to accommodate a subcoronary implantation.

PMID: 9869760 [PubMed - indexed for MEDLINE]

 

[ken]

Correction re:The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve r

Correction re:The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve r

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=11380096&dopt=Abstract

The previous posts subject & URL are incorrect. They should read:
Primary aortic valve replacement with allografts over twenty-five years: valve-related and procedure-related determinants of outcome.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9869760&dopt=Abstract

1: J Heart Valve Dis 2001 May;10(3):334-44; discussion 335 Related Articles, Books, LinkOut


The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.

O'Brien MF, Harrocks S, Stafford EG, Gardner MA, Pohlner PG, Tesar PJ, Stephens F.

The Prince Charles Hospital and the St Andrew's Hospital, Brisbane, Queensland, Australia.

BACKGROUND AND AIM OF THE STUDY: The study aim was to elucidate the advantages and limitations of the homograft aortic valve for aortic valve replacement over a 29-year period. METHODS: Between December 1969 and December 1998, 1,022 patients (males 65%; median age 49 years; range: 1-80 years) received either a subcoronary (n = 635), an intraluminal cylinder (n = 35), or a full root replacement (n = 352). There was a unique result of a 99.3% complete follow up at the end of this 29-year experience. Between 1969 and 1975, homografts were antibiotic-sterilized and 4 degrees C stored (124 grafts); thereafter, all homografts were cryopreserved under a rigid protocol with only minor variations over the subsequent 23 years. Concomitant surgery (25%) was primarily coronary artery bypass grafting (CABG; n = 110) and mitral valve surgery (n = 55). The most common risk factor was acute (active) endocarditis (n = 92; 9%), and patients were in NYHA class II (n = 515), III (n = 256), IV (n = 112) or V (n = 7). RESULTS: The 30-day/hospital mortality was 3% overall, falling to 1.13 +/- 1.0% for the 352 homograft root replacements. Actuarial late survival at 25 years of the total cohort was 19 +/- 7%. Early endocarditis occurred in two of the 1,022 patient cohort, and freedom from late infection (34 patients) actuarially at 20 years was 89%. One-third of these patients were medically cured of their endocarditis. Preservation methods (4 degrees C or cryopreservation) and implantation techniques displayed no difference in the overall actuarial 20-year incidence of late survival endocarditis, thromboembolism or structural degeneration requiring operation. Thromboembolism occurred in 55 patients (35 permanent, 20 transient) with an actuarial 15-year freedom in the 861 patients having aortic valve replacement +/- CABG surgery of 92% and in the 105 patients having additional mitral valve surgery of 75% (p = 0.000). Freedom from reoperation from all causes was 50% at 20 years and was independent of valve preservation. Freedom from reoperation for structural deterioration was very patient age-dependent. For all cryopreserved valves, at 15 years, the freedom was 47% (0-20-year-old patients at operation), 85% (21-40 years), 81% (41-60 years) and 94% (>60 years). Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098). CONCLUSION: This largest, longest and most complete follow up demonstrates the excellent advantages of the homograft aortic valve for the treatment of acute endocarditis and for use in the 20+ year-old patient. However, young patients (< or = 20 years) experienced only a 47% freedom from reoperation from structural degeneration at 10 years such that alternative valve devices are indicated in this age group. The overall position of the homograft in relationship to other devices is presented.

PMID: 11380096 [PubMed - indexed for MEDLINE]

 

[ken]

Primary Aortic Valve Replacement With Cryopreserved Aortic Allograft

Primary Aortic Valve Replacement With Cryopreserved Aortic Allograft

http://circ.ahajournals.org/cgi/content/abstract/105/1/61

--------------------------------------------------------------------------------


(Circulation. 2002;105:61.)
© 2002 American Heart Association, Inc.

--------------------------------------------------------------------------------

Clinical Investigation and Reports

Primary Aortic Valve Replacement With Cryopreserved Aortic Allograft
An Echocardiographic Follow-Up Study of 570 Patients
Przemysaw Palka, MD; Susan Harrocks, BN; Aleksandra Lange, MD; Darryl J. Burstow, MBBS, FRACP; Mark F. O?Brien, FRACS

From the Departments of Echocardiography (P.P., A.L., D.J.B.) and Cardiac Surgery (S.H., M.F.O.), the Prince Charles Hospital, Brisbane, Australia.


Correspondence to Dr P. Palka, Department of Echocardiography, The Prince Charles Hospital, Rode Road, Brisbane Qld-4032, Australia. E-mail [email protected]

Background? Despite the many advantages of an aortic allograft valve (AAV) over a prosthetic aortic valve, its durability is suboptimal. The aims of the present study were to document characteristic features of AAV dysfunction and to investigate factors influencing the development of such dysfunction.

Methods and Results? A group of 570 patients (mean age, 48±16 years) with a cryopreserved AAV underwent a follow-up echocardiographic study (mean time after surgery, 6.8 years; range, 1.0 to 22.9 years). Significant AAV regurgitation was present in 14.7% of patients, and AAV stenosis was present in 3.2%. The root replacement subgroup had the smallest number of patients with significant AAV regurgitation (5.0%) compared with the subcoronary (23.0%) or the inclusion cylinder technique subgroup (14.7%). After 10 to 15 years after AAV replacement, grade 2 AAV dysfunction was present in 40% of patients in the subcoronary subgroup, but no significant dysfunction was observed in patients in the root replacement subgroup (P<0.001). Smaller host aortic annulus size in both subcoronary (coefficient, -0.145; P=0.013) and root replacement subgroups (coefficient, -0.249; P=0.011) was associated with more frequent AAV dysfunction (grade 2). In addition, significant AAV dysfunction was more frequent when patients were younger (coefficient, -0.020; P=0.015) in the subcoronary subgroup and the donor was older (coefficient, 0.054; P=0.019) in the root replacement subgroup.

Conclusions? The present study indicates that the root replacement technique is associated with less frequent AAV degeneration. Our findings should help in establishing more strict selection criteria for surgical replacement procedure type and patient/donor factors for AAV replacement and, therefore, could lead to improve AAV longevity.

 

[Mara]

Jennie
Go with the CyroLife! I have one as my pulmonic valve and according to the cardio, I saw him this week, it is looking great! Hypertrophy of my heart is down from pre-op and things are ticking right along.

It is a stressful situation. But, I am here to tell you that there are competent and skilled surgeons who can do these procedures and who have not done thousands and who are not the "Top dog whiz kids" My guy is extremely skilled and a very precise surgeon. He is not at Mayo of CCF. But, I asked around to several physicians my family knows, they are all in the medical field except me, and without exception all the docs said that if they needed heart surgery they wouldn't let anyone but David Heimansohn touch them! I thought that was good. My brother is an anesthesiologist who does a lot of open heart surgery cases and has seen the gammut of great and disatrous outcomes. He was very impressed by the skill of my surgeon. So you don't need a guy who has done thousands. You need a guy whom you like and trust. Also make sure the surgeon you pick is doing 100% of the op and not leaving it to some fellow. Also, sometimes the docs who have done thousands are old codgers! (nothing against old codgers)

Get the op done sooner rather than later. What's more important than your health? You will feel great and be able to enjoy your family and friends and everything once the weight is off your shoulders.

just my 2 cents
-Mara

 

[LUVMyBirman]

Question to those of you with the dacron for resolution of the aortic aneurysm.

Would having the dacron graph in place along with a tissue valve necessitate anticoagulation for the graph?

 

[Jennie]

thanks

thanks

Hi again,

Thank you for your responses here. All very good things to think about. And if anyone else still has something to add, please do.

First, Elisabeth, let me say I am extremely, extremely saddened to hear about this tragic loss of your son. I can only imagine the grief that you are experiencing, and my heart is with you in this. Please, feel free to talk about it here if you need to.

Just a note that they valve they are talking about for me is the SynerGraft, but the homograph model, not the porcine. I don't know how different they are, this is part of the question. And no one has mentioned anticoagulation therapy with regards to the dacron graft - anyone please let me know if this might be so??

Ken, thanks for the articles! Keep them coming...! And if they do a replacement on me, it would be the full valve/root/aorta, so looks like I have the "root replacement" going for me, looking at the statistics there....

And thanks for the encouragement regarding surgeons. I was very much confident in the Mayo surgeon when I met with him, I have no reason to doubt his capabilities, and Mayo itself is an incredible place. I am leaning towards Mayo (today, anyway!), and I see no reason to wait until fall either. As some of you suggested, yes, hindsight: I try to approach decisions in my life from the future aspect - when I look back, will I wish I had done "X" instead of "Y"? Will I still be glad I chose that way given this possible outcome or that possible outcome? And that's my dilemma - it depends on what happens with the new valve, and that I can't predict.

I was thinking last night, maybe I'll give the Mayo surgeon a call and find out if there's some sort of report that was generated by the committee that decided Mayo would begin installing these valves. Maybe that would give me a better idea of what they feel the risks are....

so thanks....

-Jennie

 

[gary47]

valve sparing

valve sparing

Have a dacron graft--just told to take an asprin a day at this point(surgery Jan. 8th)native valve was spared at the University of Mich.--still will have to have antibiotics with any dental work done..

 

[McCln]

Decisions

Decisions

I can understand your problem of what to do. Get as much information as you can. And try not to fret too much right now. You do not need the unecessary stress at the moment. Just take a deeo breathe and clear your head. You will be able to think soon enough. At least it is safe to say you have time to get some working knowledge before making any major decisiions. You take your time and don't rush into anything you might wonder about later. You will fine. Just hang in there.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Gail in Ca]

Had my dacron placed in '89. Only took coumadin for 2 or 3 months and then only a baby aspirin every other day. (had the porcine then).
The aorta grows thru it and around it , accepts it like its own, takes about a year.
They cut thru my dacron graft when I had my porcine replaced with mechanical. It was weird to see this graft inside my tissue.
Gail