18yr old valve replacement ordered STAT

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QueenVictoria

Well thanks to all of you for your initial support. His cardio said he has a (6) aneuryism and the aortic valve must be replaced with a cow valve as he is 6'6". Also the decending aorta must be replaced with dacron (sp). We have chosen the Chief of Cardio/Thoracic at NYU Medical- Dr. Steve Colvin as his surgeon. I will have an update Thursday after our consultation. The doctor also thinks he may have Marfan's syndrome and he will be tested for that as well. Any suggestions as always is appreciated beyond words.

God Bless
 
Best wishes on a speedy recovery.I was just recently diagnosed with Marfans. I had an Valve sparing aortic root replacement in Oct of 05 and I am Getting my valve replaced on 5/9/07(AVR) since the valve didnt hold up well after first surgery so I have first hand experience in this matter. My 8yo Daughter is thought to have Marfans and we are waiting for the genetics tests to return to confirm this.If there is any Questions you would like to ask please feel free to ask.There is also a Marfans Web site that can help you It is at marfan.org Good luck and God bless.
 
Queenie :)) )
I'm certainly not going to 2nd guess your surgeon and his valve recommendation for your 18 y.o. son. I do have a few things you may want to ask, just so you are very clear on what the expectations are for him. That would be longevity of the valve for an 18 y.o. (most valve statistics are for people over 50-60 and younger people's bodies react differently with tissue valves - so make sure he understands you want the valve longevity for your son's age.) Since they also suspect Marfan's, I would ask also ask how this applies to scar tissue formation.

I'm guessing that at 18, your son could still have quite a bit of growing yet. But the good thing is that younger bodies tend to bounce back more quickly than older bodies. I'm thinking of Brian and all he's been through. Someone twice his age probably wouldn't be half as far a long in recovery as he is.

I'm so glad they caught the aneurysm!! It sounds like they are covering all bases. I'll keep you all in my prayers.
 
Just for clarification. Are you saying that there are no mechanical valves big enough for him?
As for the longevity of a tissue valve, we were told 2-8 years for a 16 yr old that had not gone through puberty. I seriously considered a tissue valve anyway, but because of his other complications finally decided on the on-x valve.
Please keep us posted.
 
(RATS - I had the post all ready to send and it disappeared...)

WOW! "STAT!" Hope all goes well for your son; no doubt they will take excellent care of him.

BTW - Have you and/or your husband and/or any other children ever been tested for bicuspid? In due time, perhaps, something to consider.

One of the things that I read here pre-op, and when I was very ill, was to find an excellent and highly recommended surgeon and explain your preferences and needs and then you could go with the valve that he recommends. I ended up consulting with three excellent and highly recommended surgeons, just for good measure; but I wasn't a STAT case, although the cardios said I had "weeks not months" to get that bad valve out.

Anyway, you and your son and your family have our best wishes. As Deanne said, please keep us posted.
 
Scott surgery date is next Thursday or Friday

Scott surgery date is next Thursday or Friday

We saw Dr.Colvin at NYU and we're just waiting to find out exactly what day. The Dr suggested we use a porcine/or bovine valve that way we don't need to use Coumadin. I am very upset that this will have to be done again when the valve wears out. Doing this once would be enuf. But at 18, it seems like IF he lives a long life he could need replacement every 15 years! It makes me so so sad. His father passed in 2004 so it's all on my shoulders. Plus my other son is graduating from college May 20th. I feel more than overwhelmed...........
 
Did any of the surgeons say WHY they were recommending a (Bovine or Porcine) Tissue Valve for an 18 Year Old Male?

The hope for the improved tissue valves is to last 20 years when implanted in 60 year olds. The younger you are, the faster the tissue valves will wear out.

Ask the surgeons about the On-X Mechanical Valves with lower propensity for clot formation and the potential for reduced Anti-Coagulation levels. Studies are being conducted in both Europe and the USA on this very issue.

For more information on the On-X valves see their website or do a SEARCH for considerable discussion and contact information.

'AL Capshaw'
 
Al is correct. You need to make sure that your doctor isn't relying on statistics for the average age of a tissue recipient which is quite a bit older than your son. Someone on another thread posted that they were told 2-8 for their son. We have a former member who's son was told 4 years. Maybe LynW will be along to tell you what they were told for longevity for her son's tissue valve and also explain to you why they chose tissue for their son.

Have you read this post on Coumadin?
http://valvereplacement.com/forums/showthread.php?t=17116

Going mechanical is the best way to avoid further surgeries. It doesn't guarantee it, but you aren't wrong to be concerned at the amount of surgeries your 18 year-old son will need to have if they put in a tissue, now and continue to used tissue with each replacement. It's not just an issue of surviving each surgery, but a question of what the quality of life will be after each. Each additional surgery can be more difficult due to scar tissue and wear and tear on the heart.

Coumadin is easily managed for most people. To be honest with you, the biggest problem with Coumadin is having it managed by someone who's bothered to keep up to date on it. We see lots of medical people operating off old, outdated, erroneous information. Studies are showing that those who home test and self-manage are the most successful. But if your son doesn't take it seriously and is forgetting to take it a lot, that could be a problem as well. Unfortunately, there is no crystal ball to see into the future on any of this. Maybe one idea would be to go tissue now, and plan for mechanical with the next replacement if you feel he's not mature enough right now to manage a daily medication that he absolutely needs to take.

I guess my biggest piece of advise is that if you have serious concerns that conflict with what the doctor is telling you, you need to pay attention to your concerns. You know your son. Years ago, my children's wise old pediatrician told me that he'd found that a mother's instinct is right 98% of the time. I've never let my children forget that.
 
No wonder you feel overwhelmed. Maybe this will help.

No wonder you feel overwhelmed. Maybe this will help.

Karlynn said:
...I'm certainly not going to 2nd guess your surgeon and his valve recommendation for your 18 y.o. son...

I'm going to try not to second guess your surgeon either, Victoria.

The following is from "Advamed--Progress You Can See":

"About 2.7 million Americans suffer from leaky heart valves1 in which one of the four valves within the heart do not function properly to ensure that the blood flows in only one direction through the heart.

100,000 Americans have repaired or replaced heart valves.2

The average life expectancy for untreated patients with severe heart valve disease is two years.1

Technological developments are improving tissue valve durability and longevity allowing for use in a wider range of patients who can now avoid life-long anti-coagulation therapy. Anticoagulation-therapy is financially and physically costly on mechanical heart valve patients. By avoiding these blood-thinning medications, tissue valve patients and the healthcare system benefit in numerous ways. Recent studies have revealed that the risks of anti-coagulation drugs, including a greater than 50% risk of a major bleeding or clotting event within 10 years, outweigh the benefits of mechanical heart valve therapy.3

Enhancements in bovine pericardial tissue heart valve technology can now help heart valves last as long as 20 years.4 Mechanical heart valves have a higher combined risk of major bleeding and reoperation than tissue heart valves, for patients over 60.5 The risks of reoperating on a patient with a tissue valve are much lower than a mechanical valve patient.6
"

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

Freeman R.V., Otto C.M. (2005). Spectrum of Calcific Aortic Valve Disease: Pathogenesis, Disease Progression, and Treatment Strategies. Circulation. 2005; 111:3319-3321.

American Heart Association. Heart Disease and Stroke Statistics-2006 Update. http://www.americanheart.org/presenter.jhtml?identifier=3018163(31 March 2006).

Lim K.H.H., et al. Prospective randomized comparison of CarboMedics and St. Jude Medical bileaflet mechanical heart valve prostheses: An interim report. J Thorac Cardiovasc Surg 2002; 123(1):21-32.

Edwards Lifesciences 1982 IDE Clinical Cohort, data on file.

Birkmeyer N., et al. Prosthetic Valve Type for Patients Undergoing Aortic Valve Replacement: A Decision Analysis. Ann Thorac Surg 2000; 70:1946-52.

Jones TM, et al. Repeat heart valve surgery: Risk factors for operative mortality. J Thorac Cardiovasc Surg 2001;122:913-8.
 
QueenVictoria said:
We saw Dr.Colvin at NYU and we're just waiting to find out exactly what day. The Dr suggested we use a porcine/or bovine valve that way we don't need to use Coumadin. I am very upset that this will have to be done again when the valve wears out. Doing this once would be enuf. But at 18, it seems like IF he lives a long life he could need replacement every 15 years! It makes me so so sad. His father passed in 2004 so it's all on my shoulders. Plus my other son is graduating from college May 20th. I feel more than overwhelmed...........

I rememberred earlier you were told he would probably need a bovine, since he is so big. were you able to get any clearer answers about if that was why he recomended the tissue? Or could it have it some thing to do w/ possible marfans, and how that affects different body systems, that being on Coum might complicate? I wouldn't drive my self nuts trying to think of why he recomended a particular valve, I would try to find out exactly why he is recomending tissue and ask the pros and cons.
Now Justin has right sided problems, but has a conduit w/ a valve in it. Actually to be more techncal, his surgeon built it in the OR using a section of dacron then a CE Bovine valve (which is looking beautiful right now )then another section of dacron his heart/conduit is right behind his sternum so he wanted the valve where it wouldn't push against the stern. Anyway the reason Justin got tissue, was his conduit wasn't going to last forever. the hopes for it were 10-15 years. so it wouldn't make sense to get a mechanical valve and deal w/ coumadin if the conduit will need replaced anyway.
So I would also ask how long the dacron graft for the aorta will last.
As for how long newer Tissues are lasting it isn't a Hope that they will last 20 years, some like the CE perimount I believe already has a track record of like 80% still free from explant at 18-20 years. Tobogo has the actual facts posted somewhere here, but it's after 2 am so I'm not going to search. And yes they will not last as long for a 18 year old., I personally would think Dr. Colvin, is proably up on the most current info. I alway heard great things about him.
Have you talked to Scott about everything, what are his thoughts?
My other suggestion, would be to contact the marfan org, and see if they have a message board or could give you info on what type of valve more of their members get and why. http://www.marfan.org/nmf/index.jsp
Well Good night I hope when I reread this tomorrow I won't be to humiliated w/ how my 2 finger typing after i took my pain meds turned out

editted because i'm awake so changed spelling and wrong words
 
guess my biggest piece of advise is that if you have serious concerns that conflict with what the doctor is telling you, you need to pay attention to your concerns. You know your son. Years ago, my children's wise old pediatrician told me that he'd found that a mother's instinct is right 98% of the time. I've never let my children forget that.
__________________

I know you don't have alot of time, But if your thoughts are so much different then the surgeons, maybe you could try to sqeeze in another opinion, Before Justin's last surgery, I had doubts about who to operate ect, and 1 week before the surgery date, i called another surgeon and ask if he could see us in a few days because Justin was schedualled for surgery at a different center. He was great about doing it. We actually picked up Justin cath cd and delieverred it ourselves so he could go over it and give his opinion in 2 days. you also could have records over nighted. Maybe you could ask the leading Marfan docs. But if oyou and Scott are happy with the plan, try not to doubt yourself, you can make your self nuts,
 
Just wanted to wish you luck, my thoughts and prayers are with you. Paula
 
Dacron root - I was told would never need replacement.
The risk of resurgeries is the scar tissue. Each time you have an additional surgery the risk increases. Have you asked about the possibility of a valve sparing -tissue saving repair (of his own valve)?
Obviously a valve decision is a exhausting decision to make. I would recommend discussing completely with your surgeon and then make your decision.
Sounds like your son is young and strong - all good things going into a surgery like this. I am sure you will see a positive outcome when this is all done! Best of luck!
 
Susan BAV said:
The following is from "Advamed--Progress You Can See":


Technological developments are improving tissue valve durability and longevity allowing for use in a wider range of patients who can now avoid life-long anti-coagulation therapy. Anticoagulation-therapy is financially and physically costly on mechanical heart valve patients. By avoiding these blood-thinning medications, tissue valve patients and the healthcare system benefit in numerous ways. Recent studies have revealed that the risks of anti-coagulation drugs, including a greater than 50% risk of a major bleeding or clotting event within 10 years, outweigh the benefits of mechanical heart valve therapy.3

Enhancements in bovine pericardial tissue heart valve technology can now help heart valves last as long as 20 years.4 Mechanical heart valves have a higher combined risk of major bleeding and reoperation than tissue heart valves, for patients over 60.5 The risks of reoperating on a patient with a tissue valve are much lower than a mechanical valve patient.6[/I]"

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My first thought on reading this was "What company paid for this article?" Because it offers no numbers for comparison. It speaks of the great financial and physical costs of choosing mechanical but says nothing about the financial and physical costs of choosing tissue valves. It discusses no drawbacks associated with tissue valves. What is the baseline risk that mechanical valves have a great than 50% risk of achieving? If it's 1%, then mechanical valves would have a 1.5% risk. I should also mention that tissue valves carry the same risk of clot/stroke as properly anticoagulated mechanical valves. The "over 10 years" is misleading as well because the 1-3% risk numbers is per year and not cummulative. It is clear that this article was written to achieve a specific purpose.

I looked up Advamed. "AdvaMed is the world's largest trade association representing medical device manufacturers, makers of medical equipment, medical software and supplies" (from the site). Both Metronics and Edwards are large members of this organization - 2 of the top manufacturos of tissue valves. So I can now understand why the drawbacks and costs, physical and financial, of tissue valves wasn't discussed in the article and why specific numbers weren't used when percentages look so much worse. It's articles like these that make me shake my head and wonder why I'm not dead...or they would if I didn't know the correct information.

Tissue valves have had some great advancements, as have mechanical valves and Coumadin protocol. They are all in a better place than they were 10 years ago. I'm 48 and my 15 year old mechanical is going strong and looking pretty. If for some reason it needed to be replaced in the future I’d gratefully consider every option because they’re all better than 15 years ago.

I don't think QV son's issue is served well by our typical tissue vs. mechanical debate, because when we're speaking of an 18 year-old we are talking aspects with both that are outside the bounds of any of the studies that are done. Let's not forget that any of these studies have a mean age of (probably) 3 times that of QV's son and valve replacement is a totally different ball of wax for someone his age, with totally different life circumstances to manage. Had QV not expressed her concern about additional surgeries and stated that she was certain that a tissue valve was the way to go, I would not have posted anything but good wishes. But I sensed that she was feeling very uncertain, as well as confused and I wanted her to see that there were options and possibly different ways of thinking outside the box.

QV if you haven't read Tobagotwo's famous posts on valve selection, I recommend doing so. http://valvereplacement.com/forums/showthread.php?t=14330 He takes a really good look at the choices and is logical and even handed with all with no attempt at promoting any particular valve choice.
 
Karlynn said:
My first thought on reading this was "What company paid for this article?" Because it offers no numbers for comparison. It speaks of the great financial and physical costs of choosing mechanical but says nothing about the financial and physical costs of chosing tissue valves. It discusses no drawbacks associated with tissue valves. What is the baseline risk that mechanical valves have a great than 50% risk of achieving? If it's 1%, then mechanical valves would have a 1.5% risk. I should also mention that tissue valves carry the same risk of clot/stroke as properly anticoagulated mechanical valves. The "over 10 years" is misleading as well because the 1-3% risk numbers is per year and not cummulative. It is clear that this article was written to achieve a specific purpose.

I looked up Advamed. "AdvaMed is the world's largest trade association representing medical device manufacturers, makers of medical equipment, medical software and supplies" (from the site). Both Metronics and Edwards are large members of this organization - 2 of the top manufacturos of tissue valves. So I can now understand why the drawbacks and costs, physical and financial, of tissue valves wasn't discussed in the article and why specific numbers weren't used when percentages look so much worse. It's articles like these that make me shake my head and wonder why I'm not dead...or they would if I didn't know the correct information.

Tissue valves have had some great advancements, as have mechanical valves and Coumadin protocol. They are all in a better place than they were 10 years ago. I'm 48 and my 15 year old mechanical is going strong and looking pretty. If for some reason it needed to be replaced in the future I’d gratefully consider every option because they’re all better than 15 years ago.

I don't think QV son's issue is served well by our typical tissue vs. mechanical debate, because when we're speaking of an 18 year-old we are talking aspects with both that are outside the bounds of any of the studies that are done. Let's not forget that any of these studies have a mean age of (probably) 3 times that of QV's son and valve replacement is a totally different ball of wax for someone his age, with totally different life circumstances to manage. Had QV not expressed her concern about additional surgeries and stated that she was certain that a tissue valve was the way to go, I would not have posted anything but good wishes. But I sensed that she was feeling very uncertain, as well as confused and I wanted her to see that there were options and possibly different ways of thinking outside the box.

QV if you haven't read Tobagotwo's famous posts on valve selection, I recommend doing so. http://valvereplacement.com/forums/showthread.php?t=14330 He takes a really good look at the choices and is logical and even handed with all with no attempt at promoting any particular valve choice.



Another quote here was, "Going mechanical is the best way to avoid further surgeries." Does this sound somewhat like a promotion of a particular valve choice:confused:?

Seemed like a good idea to "not second guess someone else's surgeon."

The footnotes from the posted article were quite interesting.
 
Victoria -

I did a quick search on Marfan's and mechanical; lots of information online but a lot is on secured members only sites and not viewable to the average person.

I really feel for you right now. I have two sons and have gone through some life-threatening medical issues with one of them. Trust your instincts. Ask the surgeon why he is recommending what he is. You might even be able to email him your questions, if you're not able to speak with him in person. I hope all goes well for your son. Take care and please post again.
 
Susan BAV said:
Anticoagulation-therapy is financially and physically costly on mechanical heart valve patients. By avoiding these blood-thinning medications, tissue valve patients and the healthcare system benefit in numerous ways. Recent studies have revealed that the risks of anti-coagulation drugs, including a greater than 50% risk of a major bleeding or clotting event within 10 years, outweigh the benefits of mechanical heart valve therapy.3

Enhancements in bovine pericardial tissue heart valve technology can now help heart valves last as long as 20 years.4 Mechanical heart valves have a higher combined risk of major bleeding and reoperation than tissue heart valves, for patients over 60.5 The risks of reoperating on a patient with a tissue valve are much lower than a mechanical valve patient.6[/I]"

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

Freeman R.V., Otto C.M. (2005). Spectrum of Calcific Aortic Valve Disease: Pathogenesis, Disease Progression, and Treatment Strategies. Circulation. 2005; 111:3319-3321.

American Heart Association. Heart Disease and Stroke Statistics-2006 Update. http://www.americanheart.org/presenter.jhtml?identifier=3018163(31 March 2006).

Lim K.H.H., et al. Prospective randomized comparison of CarboMedics and St. Jude Medical bileaflet mechanical heart valve prostheses: An interim report. J Thorac Cardiovasc Surg 2002; 123(1):21-32.

Edwards Lifesciences 1982 IDE Clinical Cohort, data on file.

Birkmeyer N., et al. Prosthetic Valve Type for Patients Undergoing Aortic Valve Replacement: A Decision Analysis. Ann Thorac Surg 2000; 70:1946-52.

Jones TM, et al. Repeat heart valve surgery: Risk factors for operative mortality. J Thorac Cardiovasc Surg 2001;122:913-8.


There is a whole lot of disinformation in this statement. Susan, do you have the link to this particular article?

50% of a major bleed in 10 years? Give me a break. Half of us or more would have had it happen already. I call shens on this one! Financially and physically costly? I'm dirt poor and I can afford my Warfarin. I don't hear anyone that's been on ACT for 40+ years complaining about anything physically taxing, except perhaps walking to appointments. I call shens on this one too!

No one can ever convince me that multiple reops are safer then going mechanical and ACT. My opinion and mine only, at your sons age, I think it's preposterous for the medical community to knowingly subject him to multiple reops. No one should have to go through this surgery more then once if it can be helped. There never is any guarantee no matter what the valve choice, but a mechanical would give him the best odds of never having to do this again. My suggestion is for you to visit Al Lodwicks site and learn all you can about Anticoagulation and dispell much of the myth that articles like this present. www.warfarinfo.com I think you owe it to yourself and your son, to at least consider mechanical regardless of what the Surgeon is suggesting. It's your sons life, not the surgeons.

I won't copy and paste this info, but check this out for yourselves,
Searching for the Truth: A Mechanical or a Tissue Valve?
http://www.icr-heart.com/journal/maysup2004/12211_Naples_30_r1.pdf
Much more accuracy in this article then what I'm seeing.
 
Susan BAV said:
Another quote here was, "Going mechanical is the best way to avoid further surgeries." Does this sound somewhat like a promotion of a particular valve choice:confused:?

Seemed like a good idea to "not second guess someone else's surgeon."

The footnotes from the posted article were quite interesting.

Gee now that first one sounds a lot like me. Is it a promotion or is it the truth?

For an 18 year old, I WOULD second guess the surgeon. I don't mind saying that I do not agree nor do I think it's right, but what else is new huh?
 
Karlynn said:
...Going mechanical is the best way to avoid further surgeries...

Hi Ross -

What does "call shens" mean?

You asked for the link to the article? Last night after I read [above quote], I searched "heart valves tissue longevity." The "statement" that you say is "a whole lot of disinformation" is found at www.progressyoucansee.org where you can click on a Media Center link and then click on Get the Facts and then click on Heart Valve Disorders. I cut and pasted the entire article, including the references.

Victoria's son's surgeon may have good reason to make the recommendation that he did. The possible Marfan's diagnosis is important also.

(Edit - I glanced quickly at the pdf you cited, Ross, but most of the tissue valve longevity reference information for that comparison is from over ten years ago and thus somewhat outdated, hopefully anyway.)
 

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