My fate is sealed...

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H

Hollyett

Well, I met with the Surgeon on Friday as planned. We have scheduled the surgery for Feb 27. So..thats that.
Something that concerns me though is that we talked about my choices for what kind of valve to use (precardial?) and the freestyle. But we didn't come to a conclusion and I don't have any more appts with the surgeon before the surgery. Just my pre-op. He said that they were leaning toward the freestyle but I still have many questions regarding this. Should I call him or just trust their judgement?
Does anyone else have any experience regardin tissue valves?
I appreciate any advice.

Thank you.
 
I put you on the calendar for February 27th. I suggest that you look through all the posts on valve selection and then come back and ask away with any questions you may have. I'm sure your surgeon will be willing to discuss the chocie of valve with you again before surgery. Many things to take into consideration- your age, lifestyle, etc. You still have time to research, so read away!:)
 
My prayers are with you for the 27th Holly

My prayers are with you for the 27th Holly

It's a very difficult and personal decision, this valve choice. I am going in on 6th Feb, and my pre op is tommorrow.
I am also not sure what to do and the only advice I can give is write down everything you would like to ask. Then contact the hospital and ask to speak to your surgeon when you go in for your pre op. He should be able to do this as it will probably be the right day that his or her clinic is on. At my hospital the cardiac nurses were very helpful too, from a slightly different point of view of the care of so many people afterwards. I have a huge list of questions for mine tommorrow, and hope that a decision will appear afterwards. Just remember that whatever you decide will be right for you and you are in the best hands.

Wishing you all the best and a speedy recovery.

Lotti
 
It is good that you have made a date for your surgery! I think is is VERY important that you get some more advice from your surgeon about the valve choice. Please take some time to read through old posts here about valve types. Formulate a short list of questions and then call the surgeon's office. He should be very willing to discuss things with you over the phone. If you feel you need another appointment to get this settled, then check with your insurance and make another appointment. The valve will be with you for a very long time. It is important that you understand your choices. There are many here who can guide you to more informaiton if you need it.

Best wishes.

Marguerite (I'm still trying to decide which valve, myself! :) )
 
The two valves you are discussing are the Carpentier-Edwards Perimount Magna, which is made of bovine pericardium and the Medtronics Freestyle, which is a natural porcine valve. The CEPM would be used as it is received, the Freestyle would be cut by the surgeon to order for the surgery.

The argument for the Freestyle is that it's used as a stentless valve, which should obstruct blood flow less than a stented valve. It is sewn directly into the wall and is supported by it. However, the stented CEPM is sewn in supraannularly (meaning on top of a natural ridge), so it has minimal effect on the bloodflow.

The difference in pressure gradients in a 25mm valve is 4.3 mmHg, from 8.2 mmHg (Freestyle) to 12.5 mmHg (CEP). This is a small difference. Note also that the CEP valve shown is not the supraannularly placed model, which would tend to make the difference smaller.

Remodelling after six months is equivalent for both valves. The instance in which the difference in bloodflow might be more of a consideration is if you need a very small valve size.

The Freestyle has only been on the market since 1996. The closest similar item is the Toronto stentless porcine valve (SPV), now being marketed by St. Jude. Its useful life averaged 15-18 years. (Assume valve lifespan for patient 50+ years old.) The SPV doesn't have advanced tissue processes like the Freestyle's, however, which should extend the Freestyle's life.

The CEP models have a history of 90% still functioning at 20 years, in the models produced before advanced tissue processing. (Assume valve lifespan for patient 50+ years old.) Expectations are that the tissue processes will extend that lifespan also.

You should consider your age in your planning. If you are younger, you should consider asking your surgeon about stabilizing the root, as it can expand or deform over time if you have more advanced BAV tissue problems, potentially causing your valve to leak or be obstructed.

Best wishes,
 
Thank you all for the kind words....

Tobagotwo - Thank you for that very in depth info on my valve choices. although, to be honest..it's all another language to me. I'm going to take the information you gave me and contact my surgeon again, to discuss this further with him..and also my family. Thank you again. I great appreciate it.

Knightfan - I am having my surgery at Rush University (downtown Chicago) and my surgeon's name is Dr. Marshall Goldin. All inforamtion I have ever read about him or heard ...is all great. He is supposed to be the "top dog" per say, in the area of Valve replacements. He is a little older, but I suppose that just means that he's been doing this type of surgery for over 30 years now.

And again, I am having my Aortic Valve replaced. I have Aortic Insufficiency.

another thing that concerned me was, as soon as my Cardiologist started doing all of the tests (echo, TEE, Heart cath) he said I was going to need surgery within the next couple of months. Then when I met with the surgeon he told me that according to the American Medical Association, you heart has to be a certian size to require surgery, my heart although has enlarged, has not reached that size yet. But he said, since I am having symptoms (shortness of breath, fatigue) and since I am leaking a good amount of blood, I would have to have the surgery in that not to far off future. He recommended having me do a stress test that day but said he woiuld call my Cardiologist first to see what he thinks again. (they are apparentley good friends from college). After talking with him..apparentley my Card told him..she doesn't need anymore tests, she needs this surgery withing the next few months. So..we scheduled the surgery for the end of February. My cardiologist had told me before that they were going to get me "fixed up" so I can go on with my life..plan my wedding, have children. Is this why there is such a rush on the surgery. I'm quite confused actually. Although I do trust my Cardiologist and my Surgeon, I was just a little confused as to why we are doing the surgery if my heart hasn't reached that certain size yet. I know it will reach it eventually, but who knows how long that would take. I think he just thinks that I being so young, should just get it over with. I don't know. I suppose it won't hurt (wrong words?) to just get it done, and be done. Any thoughts?
 
Hollyett said:
Thank you all for the kind words....

Tobagotwo - Thank you for that very in depth info on my valve choices. although, to be honest..it's all another language to me. I'm going to take the information you gave me and contact my surgeon again, to discuss this further with him..and also my family. Thank you again. I great appreciate it.

Knightfan - I am having my surgery at Rush University (downtown Chicago) and my surgeon's name is Dr. Marshall Goldin. All inforamtion I have ever read about him or heard ...is all great. He is supposed to be the "top dog" per say, in the area of Valve replacements. He is a little older, but I suppose that just means that he's been doing this type of surgery for over 30 years now.

And again, I am having my Aortic Valve replaced. I have Aortic Insufficiency.

another thing that concerned me was, as soon as my Cardiologist started doing all of the tests (echo, TEE, Heart cath) he said I was going to need surgery within the next couple of months. Then when I met with the surgeon he told me that according to the American Medical Association, you heart has to be a certian size to require surgery, my heart although has enlarged, has not reached that size yet. But he said, since I am having symptoms (shortness of breath, fatigue) and since I am leaking a good amount of blood, I would have to have the surgery in that not to far off future. He recommended having me do a stress test that day but said he woiuld call my Cardiologist first to see what he thinks again. (they are apparentley good friends from college). After talking with him..apparentley my Card told him..she doesn't need anymore tests, she needs this surgery withing the next few months. So..we scheduled the surgery for the end of February. My cardiologist had told me before that they were going to get me "fixed up" so I can go on with my life..plan my wedding, have children. Is this why there is such a rush on the surgery. I'm quite confused actually. Although I do trust my Cardiologist and my Surgeon, I was just a little confused as to why we are doing the surgery if my heart hasn't reached that certain size yet. I know it will reach it eventually, but who knows how long that would take. I think he just thinks that I being so young, should just get it over with. I don't know. I suppose it won't hurt (wrong words?) to just get it done, and be done. Any thoughts?

I didn't see any mention previously about your wanting to have children. If you do, it is generally advised to go with a nonmechanical valve. Pregnancy and anticoagulation can be an iffy proposition. You definitely should mention this to your surgeon when you talk to him again.
 
Thanks Mary.

There is no question that I'm going to get a tissue valve. That was decided from the beggining. I am a little to young I think to be on Coumadin for the rest of my life. Although I know that this does mean that ultimately I will need another surgery in 10-20 years, at least I will be able to have children with virtually no worries.
The question now is which one to go with.

Thank you all for the kind words and advice so far. It definitely helps!
 
Hollyett said:
Thanks Mary.

There is no question that I'm going to get a tissue valve. That was decided from the beggining. I am a little to young I think to be on Coumadin for the rest of my life. Although I know that this does mean that ultimately I will need another surgery in 10-20 years, at least I will be able to have children with virtually no worries.
The question now is which one to go with.

Thank you all for the kind words and advice so far. It definitely helps!

I should have reread your post; I'd forgotten you were trying to decide between the bovine pericardium and porcine valve. It must have been a senior moment.;) ;)
There's a poll going in the valve selection forum where you can see which members have what type of tissue valve. I'm partial to the Carpentier, since that's what I've got, but some of my best buddies on the site are oinkers!:p :p :p I don't think it's that big of decision; the surgeon used what he thought best on me and I never gave it a thought. But you might want to take a look at the poll and see what you think.
 
Type of Valve to use

Type of Valve to use

It definitely is a hard decission to make, but I am going with the tissue valve. I don't want to be on blood thinner the rest of my life. When I talked with the surgeon about the different types he said the choice was mine and he would put in whichever I wanted. One thing that he did say to me is that the mechanicial ones are just that and they so sometimes breakdown without warning where the tissue ones are closer to normal and would usually give you some warning of problems.....
 
Better Not to Wait Too Long

Better Not to Wait Too Long

Hollyett said:
Thank you all for the kind words....

Tobagotwo - Thank you for that very in depth info on my valve choices. although, to be honest..it's all another language to me. I'm going to take the information you gave me and contact my surgeon again, to discuss this further with him..and also my family. Thank you again. I great appreciate it.

Knightfan - I am having my surgery at Rush University (downtown Chicago) and my surgeon's name is Dr. Marshall Goldin. All inforamtion I have ever read about him or heard ...is all great. He is supposed to be the "top dog" per say, in the area of Valve replacements. He is a little older, but I suppose that just means that he's been doing this type of surgery for over 30 years now.

And again, I am having my Aortic Valve replaced. I have Aortic Insufficiency.

another thing that concerned me was, as soon as my Cardiologist started doing all of the tests (echo, TEE, Heart cath) he said I was going to need surgery within the next couple of months. Then when I met with the surgeon he told me that according to the American Medical Association, you heart has to be a certian size to require surgery, my heart although has enlarged, has not reached that size yet. But he said, since I am having symptoms (shortness of breath, fatigue) and since I am leaking a good amount of blood, I would have to have the surgery in that not to far off future. He recommended having me do a stress test that day but said he woiuld call my Cardiologist first to see what he thinks again. (they are apparentley good friends from college). After talking with him..apparentley my Card told him..she doesn't need anymore tests, she needs this surgery withing the next few months. So..we scheduled the surgery for the end of February. My cardiologist had told me before that they were going to get me "fixed up" so I can go on with my life..plan my wedding, have children. Is this why there is such a rush on the surgery. I'm quite confused actually. Although I do trust my Cardiologist and my Surgeon, I was just a little confused as to why we are doing the surgery if my heart hasn't reached that certain size yet. I know it will reach it eventually, but who knows how long that would take. I think he just thinks that I being so young, should just get it over with. I don't know. I suppose it won't hurt (wrong words?) to just get it done, and be done. Any thoughts?


You'll get a lot of good advice on type of valve, I just wanted to pitch in on your question of why the surgery now. Basically my thought is that if you wait until the enlargement has reached that "certain size," you are risking a rupture occurring before the surgery can help you. I had the same qualms, and my cardiologist and surgeon watched my growing numbers carefully, but when the surgery came, it evidently was just in the nick of time. My symptoms had not been severe, but the operation showed that my aortic root had reached 5.5 cm whereas the echo just two months earlier had shown it at 5.3. And my valve was leaking "catastrophic amounts" of blood.

My point is the numbers at a particular time are not static, they are in flux. And if you delay too long, and rupture occurs, the best surgeons in the world may not be able to help you. Better to get on with the replacement, and start living a healthy, happy life again.

Since the surgery a year ago, I have lived a very active life -- even surviving a household move :D ; plus, I continue to do work for hire from home, and work out regularly. It was scary, and I too often wondered -- well, what if we just put this off some more. But my advice is not to wait if it's clear you are getting close to the danger zone.

Best wishes,

Bob
 
Maybe I missed something, but Hollyett is your aortic root aneurysmal? I have to admit that I wondered before RobHol's post, but now I have to ask.
 
I guess I'll have to reread the AHA/ACC site. I don't recall any such thing as having to reach a certain size of enlargement before surgery. Ridiculous, as hearts simply don't start off the same size. In effect, such a statement would simply ensure the risk of permanent damage, particularly to women, or to men who start off with smaller sized hearts.

The AHA/ACC Guidelines do distinguish between patients who do or do not have symptoms. When there are symptoms, the values for heart enlargement and valve annulus size are considered less important, and the requirement for surgery more imminent.

The AHA/ACC Guidelines also do state that exercise stress tests should not be performed by symptomatic valve patients, as it is considered risky to the patient, and that values gained from such tests are frequently found to be unreliable regardless.

I trust your surgeon is very good as a surgeon in the operating room, because that is what you are looking for from him. However, I personally would fire him as a diagnostician, based on what has been said here. Just my opinion. Three cheers for your cardiologist, who I believe has got it right.


Best wishes,
 
My knowledge of the technicalities of all this pales in comparison with tobagotwo's. I didn't mean to imply that there is one critical size of an enlarging aortic root that applies to everyone. Obviously given differences in the sizes of people and of hearts, that would not be the case. But in my case, I believe I remember that my cardiologist said a 6.0 cm aortic root was the point of almost-sure disaster. My numbers had been increasing steadily and the aortic root was 5.5 cm on the day of surgery with an ascending thoracic aortic aneurysm with the dilation extending through the arch at 4 cm. Not good.


If we are taking about enlargement of the aortic root (or an aneurysm), the point is that when a patient reaches a critical size (which may vary according to the individual) there is a greatly increasing risk of spontaneous rupture or dissection, both of which can be catastrophic events. Since she had talked about enlargement and reaching a critical reading, I assumed this was a case similar to mine. If I assumed wrongly, I'm sorry. Still, my point is, better to act to head off a bad outcome than to wait for it to be on the verge of happening. I, too, perceive that your cardiologist is on top of the situation.
 
Hollyett,

I'm not familiar with that hospital or that surgeon ... heard of the hospital, of course, but not the surgeon. My cardiologist is at Northwestern Memorial ... and all of my surgeries (thus far) have been at Children's Memorial Hospital.

Good luck!
 
Wow. Thank you guys for all of the info and advice. This sure is a lot to take in.

I don't beleive it's my aortic root thats enlarged. I'm pretty sue it's my left Ventricle from having so much blood leak back into it....I believe my heart is just enlarging from having to work so hard for for my valve is overcompensating for all of the lost blood.
At least I think....

I suppose you all are right. I have the date already and all of the papaerwork is being prepared for my work. I should just get it over and done with.

Thank you all, I will definitely keep you guys updated.

:)
 
Hollyett said:
Wow. Thank you guys for all of the info and advice. This sure is a lot to take in.

I don't beleive it's my aortic root thats enlarged. I'm pretty sue it's my left Ventricle from having so much blood leak back into it....I believe my heart is just enlarging from having to work so hard for for my valve is overcompensating for all of the lost blood.
At least I think....

I suppose you all are right. I have the date already and all of the papaerwork is being prepared for my work. I should just get it over and done with.

Thank you all, I will definitely keep you guys updated.

:)

Hello Hollyett,

I probably have the least amount of knowledge on this site - so this might be a silly suggestion - but has anyone talked about doing a Ross Procedure? I have a stenotic aortic valve - and that seems to be the plan for me (in a large part due to the fact that I am a young female who wants kids one day). I am not sure if they consider it when there is insufficiency - but just thought I would toss that idea out there.

Good luck with your decision - it seems it's never an easy one to make :)

Ashley
 
Hollyett said:
Thank you all for the kind words....

Tobagotwo - Thank you for that very in depth info on my valve choices. although, to be honest..it's all another language to me. I'm going to take the information you gave me and contact my surgeon again, to discuss this further with him..and also my family. Thank you again. I great appreciate it.

Knightfan - I am having my surgery at Rush University (downtown Chicago) and my surgeon's name is Dr. Marshall Goldin. All inforamtion I have ever read about him or heard ...is all great. He is supposed to be the "top dog" per say, in the area of Valve replacements. He is a little older, but I suppose that just means that he's been doing this type of surgery for over 30 years now.

And again, I am having my Aortic Valve replaced. I have Aortic Insufficiency.

another thing that concerned me was, as soon as my Cardiologist started doing all of the tests (echo, TEE, Heart cath) he said I was going to need surgery within the next couple of months. Then when I met with the surgeon he told me that according to the American Medical Association, you heart has to be a certian size to require surgery, my heart although has enlarged, has not reached that size yet. But he said, since I am having symptoms (shortness of breath, fatigue) and since I am leaking a good amount of blood, I would have to have the surgery in that not to far off future. He recommended having me do a stress test that day but said he woiuld call my Cardiologist first to see what he thinks again. (they are apparentley good friends from college). After talking with him..apparentley my Card told him..she doesn't need anymore tests, she needs this surgery withing the next few months. So..we scheduled the surgery for the end of February. My cardiologist had told me before that they were going to get me "fixed up" so I can go on with my life..plan my wedding, have children. Is this why there is such a rush on the surgery. I'm quite confused actually. Although I do trust my Cardiologist and my Surgeon, I was just a little confused as to why we are doing the surgery if my heart hasn't reached that certain size yet. I know it will reach it eventually, but who knows how long that would take. I think he just thinks that I being so young, should just get it over with. I don't know. I suppose it won't hurt (wrong words?) to just get it done, and be done. Any thoughts?

I know how you feel, it can be quite confusing when your doctors don't tell you the same thing. My cardiologist told me to just go home and wait and that we'd do more testing in 6 months. I could not just wait and not worry so I researched on the internet and found the Bi-Cuspid foundation. Thru this foundation I had several telephone consults with Dr. Raissi in LA. He recommended not waiting due to the risk of rupture before my root reached the "recommended" size. I was having symptoms already and the risk of rupture meant I had to discontinue my exercise routine, which would have resulted in decreased health prior to surgery. I encouraged my doctors here to consult Dr. Raissi and they all decided it was best to go forward with surgery. I have no regrets. I went with the Bovine valve.

You will be in my prayers for a successful surgery and speedy recovery
 
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