Update and Opinions Requested

[TXpoison]

I wanted to post an update and solicit any opinions and thoughts.

Based on several responses to my first post I have had a fairly busy month. First of all, I spoke with my PCP about Bicuspid Aortic Valve Disease. He wasn?t familiar with it, but made copies of the information I had and scheduled a follow up. When I went back, he agreed to order a CT scan and MRA to check for any possible aneurysms. I feel blessed to have a PCP that not only was interested in what I had to say without blowing me off, but took the time to study the topic for himself. My insurance agreed to cover the tests and I had them about two weeks ago. They both came back normal, no signs aneurysms. What a relief that was! I also had a follow-up visit with my cardiologist and he too listened to what I had to say about BAVD and also made copies of my information on the subject.

I had an interview with a surgeon last week, Dr. Michael Mack in Dallas, to get his opinion on whether he thought it might be time to schedule valve replacement surgery (Some of my Echo findings from May are: Aortic Valve Area = 0.7 cm2, Aortic Velocity = 4.7 m/s, EF = 60-65%, and Mean Gradient = 45; Diagnosis: Moderate aortic insufficiency and severe aortic stenosis). I really enjoyed meeting with him. He stated he does about 150 valve replacement surgeries a year. He took the time to answer all of my questions and never acted like he was in a hurry to get to his next appointment. He said that the majority of the aortic valve replacement surgeries he performs are done with a tissue valve. However, based on my age (42) and the fact that I have had some heart rhythm issues in the past, he felt that mechanical was the way to go for me. He was familiar with BAVD and said that in addition to having just a mechanical valve ready for replacement, he would also have a Dacron sleeve/valve combination ready in case he found that ascending aorta would need to be replaced. He said that based on what the TEE could show or by actually examining the aorta once he was inside, that sometimes he replaces a portion of the aorta even though there is not an aneurysm present.

Based on some the VR.com threads I have read I asked him about the ?pump head? syndrome. It was not something he shied away from. He said that he felt there probably was some validity to it, but in his opinion it was more likely to occur in ?older? people. I like the fact that he didn?t try to dance around the topic.

Perhaps the most important thing from the meeting was the fact that my wife was very impressed and comfortable with him.

There was only one draw back from my talk with him. He only uses the St. Jude mechanical valve. While I know there is nothing wrong with this valve, I would like to look at the possibility of other valves such as the ATS or ON-X valves (again based on information I learned from reading VR.com postings!)

Dr. Mack said that based on my numbers, even though I am asymptomatic, he didn?t see any reason not to have surgery in the near future.

The last topic has to do with stress testing. When I went to the cardiologist for the second visit, he suggested a stress test and scheduled one for this week (Thur the 8th). Then I started reading about stress tests on VR.com (information overload?!). I understand that there is some real concern as to how accurate a stress test can be in determining whether or not there is any blockage and to the severity of it if it does exist. On the other side of the coin, I have also read some papers by Dr. Blasé Carabello of Houston who states that in asymptomatic patients with aortic stenosis, stress testing may help identify patients that require valve replacement surgery. (http://circ.ahajournals.org/cgi/content/full/105/15/1746). I am still uncertain about whether or not to proceed with the test.

While I understand one should never go through OHS just to have it done, I have really been consumed by it lately, and knowing that I will almost assuredly need it within the next 18 months, it may be best to have done sooner rather than later and have the %9?luxury? of planning for it when it is more convenient for all involved.

Although I was really impressed with Dr. Mack and would be confident in letting him do the surgery, I plan on seeing at least one other surgeon before making a decision on the timing.

I know this has been rather wordy (my wife claims it is a byproduct of being an engineer), but there are two reasons for it: 1) I would value any and all input from the VR.com community on my situation and 2) perhaps it might help anyone who is new to the website or the world of valve replacement.

I think the one of the biggest benefits of this site is realizing the importance of taking charge of the situation by learning as much as possible, and finding doctors who are willing to listen and work with you.

Also, while we have to put our trust in doctors, nurses, and others to take care of us to the best of their ability, I believe that ultimately it is God in whom we must put our faith for our immediate and long term health. I would appreciate your prayers for myself and my family (wife and three children) during this time of decision making.

Thanks for everything

 

[Mary]

Ken,

You have done extensive research into your valve situation and you should be commended. It's refreshing to hear that your doctors have been receptive to the information you supplied about BAV and have taken your concerns seriously.

You have asked for opinions concerning whether you should try to schedule surgery even though you are perhaps 18 months out. Since you are asymptomatic, I would wait. Valve replacement is a hard surgery to undergo. You won't realize how hard until you experience it. If you're not having symptoms, I would try to wait another 6 months to a year.

I was symptomatic, and my stenosis was severe. Through my recovery process, I have had the satisfaction of realizing that I feel much better now than I did beforehand. I don't know that you would feel the same considering your circumstances. You might really question why you went ahead with surgery when it might have been postponed.

My biggest regret through this process has been the time that I wasted worrying about the timing of surgery. You state that you have been consumed by it lately. Don't be! Time is too precious to be squandered over thoughts of surgery scheduling. You will be consumed soon enough with the reality of surgery and recovery.

Finally, I would undergo the stress test. Tobagotwo will rap my knuckles for this opinion, but I would.
Good luck with any decisions you make.
Mary

 

[Ross]

Don't have much feedback for this one, you've covered all the bases. I do not think a stress test is necessary at all after all the other tests you've done already. In my opinion, stress tests are dangerous. Just my 2 pennies though.

 

[Brent D]

just went through AVR in Dallas

just went through AVR in Dallas

Hello, I am new to the forum, but have recently gone through AVR in Dallas. I wish I would have known about this forum before my surgery, it is quite helpful.

I am a 32 year old male, and I was asymptomatic till about 2 weeks before my surgery. Other than that, I had just followed my condition with trips to my cardiologist every 6 months or so.

While OHS is not a fun thing to go through, I have to say that I couldnt have had a better experience with my hospital or my surgeon Dr. Robert Hebeler. I would be happy to pass on any more information if you are interested..

It has been 8 weeks since the surgery and I am feeling great. I only wish I would have done it sooner!!

Please let me know if I can help you in any way.

I wanted to post an update and solicit any opinions and thoughts.

Based on several responses to my first post I have had a fairly busy month. First of all, I spoke with my PCP about Bicuspid Aortic Valve Disease. He wasn?t familiar with it, but made copies of the information I had and scheduled a follow up. When I went back, he agreed to order a CT scan and MRA to check for any possible aneurysms. I feel blessed to have a PCP that not only was interested in what I had to say without blowing me off, but took the time to study the topic for himself. My insurance agreed to cover the tests and I had them about two weeks ago. They both came back normal, no signs aneurysms. What a relief that was! I also had a follow-up visit with my cardiologist and he too listened to what I had to say about BAVD and also made copies of my information on the subject.

I had an interview with a surgeon last week, Dr. Michael Mack in Dallas, to get his opinion on whether he thought it might be time to schedule valve replacement surgery (Some of my Echo findings from May are: Aortic Valve Area = 0.7 cm2, Aortic Velocity = 4.7 m/s, EF = 60-65%, and Mean Gradient = 45; Diagnosis: Moderate aortic insufficiency and severe aortic stenosis). I really enjoyed meeting with him. He stated he does about 150 valve replacement surgeries a year. He took the time to answer all of my questions and never acted like he was in a hurry to get to his next appointment. He said that the majority of the aortic valve replacement surgeries he performs are done with a tissue valve. However, based on my age (42) and the fact that I have had some heart rhythm issues in the past, he felt that mechanical was the way to go for me. He was familiar with BAVD and said that in addition to having just a mechanical valve ready for replacement, he would also have a Dacron sleeve/valve combination ready in case he found that ascending aorta would need to be replaced. He said that based on what the TEE could show or by actually examining the aorta once he was inside, that sometimes he replaces a portion of the aorta even though there is not an aneurysm present.

Based on some the VR.com threads I have read I asked him about the ?pump head? syndrome. It was not something he shied away from. He said that he felt there probably was some validity to it, but in his opinion it was more likely to occur in ?older? people. I like the fact that he didn?t try to dance around the topic.

Perhaps the most important thing from the meeting was the fact that my wife was very impressed and comfortable with him.

There was only one draw back from my talk with him. He only uses the St. Jude mechanical valve. While I know there is nothing wrong with this valve, I would like to look at the possibility of other valves such as the ATS or ON-X valves (again based on information I learned from reading VR.com postings!)

Dr. Mack said that based on my numbers, even though I am asymptomatic, he didn?t see any reason not to have surgery in the near future.

The last topic has to do with stress testing. When I went to the cardiologist for the second visit, he suggested a stress test and scheduled one for this week (Thur the 8th). Then I started reading about stress tests on VR.com (information overload?!). I understand that there is some real concern as to how accurate a stress test can be in determining whether or not there is any blockage and to the severity of it if it does exist. On the other side of the coin, I have also read some papers by Dr. Blasé Carabello of Houston who states that in asymptomatic patients with aortic stenosis, stress testing may help identify patients that require valve replacement surgery. (http://circ.ahajournals.org/cgi/content/full/105/15/1746). I am still uncertain about whether or not to proceed with the test.

While I understand one should never go through OHS just to have it done, I have really been consumed by it lately, and knowing that I will almost assuredly need it within the next 18 months, it may be best to have done sooner rather than later and have the %9?luxury? of planning for it when it is more convenient for all involved.

Although I was really impressed with Dr. Mack and would be confident in letting him do the surgery, I plan on seeing at least one other surgeon before making a decision on the timing.

I know this has been rather wordy (my wife claims it is a byproduct of being an engineer), but there are two reasons for it: 1) I would value any and all input from the VR.com community on my situation and 2) perhaps it might help anyone who is new to the website or the world of valve replacement.

I think the one of the biggest benefits of this site is realizing the importance of taking charge of the situation by learning as much as possible, and finding doctors who are willing to listen and work with you.

Also, while we have to put our trust in doctors, nurses, and others to take care of us to the best of their ability, I believe that ultimately it is God in whom we must put our faith for our immediate and long term health. I would appreciate your prayers for myself and my family (wife and three children) during this time of decision making.

Thanks for everything

 

[PJmomrunner]

I commend you for bringing copies of BAVD info with you to your appointments. This was a straightforward means of letting your doctors know what you know and giving them the opportunity to either bone-up on or refute the info.

I think the surgeon you saw makes sense and sounds well-qualified based on the number of surgeries he does. I suspect surgeons have their favorite valves based not only on longevity, hemodynamics, etc., but also on what they are familiar with and what they keep on-hand (that being said, I have to believe they would not stick with a brand if they felt another offered substantially superior performance). There are probably nuances of implant technique that vary between valve brands and models--I want my surgeon to use the one he can implant with his eyes closed! Also, they have to have lots of sizes on-hand, they all probably have some limited shelf-life, and they probably prefer not to devote a whole lot of space to storing multiple brands. Personally, while I have done a tremendous amount of research, and I have done my level best to let my surgeon know who I am as a person, I prefer to trust that my surgeon will choose the valve that's best for me, and convince me why it IS best for me. If you feel strongly that you want to evaluate the various valves and choose which one you will have implanted, it probably makes sense for you to do that research before choosing the surgeon you will go to for your second opinion as it does seem that they have their favorites.

As for the stress test, I say go ahead and have it because it may help you decide just how symptomatic you are...but have it after you choose your surgeon and have it done at the hospital where your surgeon operates, so that if anything really nasty happens, record of it is easily accessible for your surgeon and, if (God forbid) you need emergency surgery, you get the surgeon you already picked!

As far as obsessing about the timing of surgery, I obsessed for a long time and now I am patiently waiting (which is sometimes very difficult). The time spent obsessing is what made it possible to wait. If I did not obsess I would not feel I gave enough thought to my timing choice (or any other serious choice) and I would find too much room for doubt and second-guesses after the fact. If your nature is similar, go ahead and obsess. It is not wasted time.

 

[Phyllis]

You've done your homework and that's great. Since you do have time, I suggest that you get another opinion from another surgeon and one that will consider and has experience with the other valves that you have expressed an interest in. Our biggest considerations in choosing a surgeon were his experience, the valve he would use and the quality of the care at the hospital. Sometimes the best don't have great bedside manners, but that shouldn't matter, it's more important to get the job done right!

 

[pmenhenett]

Just a word of caution about waiting for your surgery. I convinced myself that I was too busy for OHS and waited so long for my first surgery that my recovery was longer. Because I was symptomatic, I had stopped exercising and was less active than normal in the last six months before surgery. I only had the surgery when I felt I couldn't keep working. The last time I had OHS surgery (3 months ago) it was due to complications of the first surgery and I had been exercising three times a week right before the surgery and felt great. My recovery this time has been much easier.

 

[ALCapshaw2]

Well Done Ken !

(Being an Engineer also, I liked your engineering analysis

Several items caught my attention:

Your Arotic Valve Area = 0.7 cm sq
MY cardiologist uses 0.8 as his 'trigger' point for recommending surgery so that alone says "it's time".

Stress Tests are NOT recommended for symptomatic patients. While you say you are not symptomatic, you MAY find that after surgery that you notice an increase in energy and stamina as several of our members have experienced. This may suggest that you really are symptomatic but have become accustomed and conditioned to your current status.

As both a CAD (coronary artery disease) and valve patient who has survived both Bypass Surgery and AVR. I have had MANY nuclear stress tests. A record of the time required to reach my maximum heartrate was the most useful result. The nuclear images were nearly identical every time (yep%, you show signs of an old heart attack). Whenever I was symptomatic, they always wanted to proceed with a cardiovascular angiogram (heart catheterization) which is a MUCH more definitive test and will probably be required (or at least requested) by the surgeon to be sure your arteries are not in need of bypass (while he is in there).

Interim Recommendation: Skip the stress test and go ahead with a heart catheterization (no big deal - I've lost count of mine - but I admit I was 'freaked out' before my FIRST one). You may want to wait to see exactly what tests your surgeon wants to see.

The Surgeon you interviewed sounds competent but if you are still interested in the On-X Valve (which has great appeal, especially to the engineering mind) you should probably get a second opinion from another surgeon who has EXPERIENCE with that valve AND BAV patients. Your cardiologist may be able to help with one or more recommendations or you may want to search on your own (or both). In either case, start now. You really don't want to let your valve area get much smaller which could result in further damage to your heart muscles and walls.

'AL Capshaw'

 

[TXpoison]

Thanks for the replies. I called my cardiologist's office today and made sure that I could talk with him before taking the stress test. I will explain my concerns and really try to have him explain what will be accomplished by doing the test.

 

[jayaresq]

Howdy, TXpoison!

Howdy, TXpoison!

Hi TX. Saw your well-considered post and empathized with your decisional crossroads. I was there myself this summer. We also have a few common factors in our stories.

I presented symtomatic (BAV=0.6) in April/May and was given a much shorter trigger time. I promptly interviewed the two most acclaimed heart surgeons I could find (L.A. has several) and set a tentative surgery date 5 weeks hence with each. That gave me the security of locking down a chosen date, the ability to plan and rearrange my professional life, and a series of natural deadlines for doing and decision-making before surgery. Lawyers, like engineers, sometimes tend to think backward from a given conclusion.

I was satisfied that both surgeons I met were extremely competent doctors connected to world-class hospitals. For me, as it seems to have occurred to several on this site, my single overriding decision was my choice of valve. A dependable and likely life-lasting mechanical valve and coumadin or a silent tissue valve with only daily aspirin, but the anticipation of a second (and, if lucky, a third!) OHS in the prime of my daughter's youth. It was easy to obsess about the comparative downsides.

A couple others have already smartly suggested that you research and meet another surgeon or two for peace and comparison. Good advice. I ended up with one quality surgeon who used (preferred) the On-X valve, and another who wouldn't (relied on St. Jude, the tried and true standard), but favored and regularly implanted bovine valves in his older AVR patient base. The first decision was the toughest and most personal. But then one decision just followed another.

Because of my advanced stenosis and to be hyper-cautious against causing an embolic event, I was advised against having either a stress test or a catheter-driven angiogram. Instead, to gauge my arterial health, I submitted to a CT angiogram (with iodine contrast). My surgeon told me the combo of a thorough ECG, CT and his actual "hands-on" examination during surgery was ample.

OK, last point and I'll go away. I'm now 7 weeks post-AVR. I actually feel better. Even with the challenges, the past 7 weeks have been better than the 7 weeks BEFORE surgery. Fear and frustration have given ground to hope and appreciation. Go figure. I was glad I had just enough time pre-surgery to calmly take care of business and gird myself, but not too much time that I could afford to wallow in it. As many of these extraordinary members will tell you, each person comes to accept and appreciate the decisions each made for him/her self. You will, too.

Hope this was helpful. Good luck and God bless. -- Jim

 

[TXpoison]

Cancelled Stress Test

Cancelled Stress Test

I went to my cardiologist?s office last week for my scheduled stress test. Before I took the test I wanted to speak to him about my concerns and what he hoped to learn from it. After some discussion and upon learning that I had spoken with a surgeon who said that he saw no reason for waiting on replacement surgery, my cardiologist agreed that there was no reason to do the stress test. I have to admit that I was somewhat relieved.

I am in the process of setting up appointments to talk with two more surgeons to get their opinions on the timing of surgery.

I will update later.

Jim, thanks for the comments. In some strange way I am looking forward to being post-up to hopefully see how much better I might feel.

Brent, Dr. Hebeler was one of the doctors I want to talk to. The first sugeon I spoke with actually mentioned him as someone to talk to if I wanted other opinions. Any information you could offer would be great. If you want, you could send me a PM.

 

[Ross]

Ken just remember, your going to feel a whole lot worse before you start to feel better. You cannot rush recovery no matter how bad you want too.
I just don't want you to feel deceived right after surgery and suffer the anxiety of not being where YOU want to be in recovery.

 

[McCln]

Just saw your post and impressed on your research. Information and kmowledge is the key to sanity. Just know that you have had two doctors opinions already and agree with the same answer. I hope the others won't be much different. That you get all the answers you are seeking. Good luck and hang in there.