Questions for Cardiac Surgeons

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C

cbdheartman

Well-known member
Joined
May 4, 2009
Messages
180
Location
Silver Spring, MD, USA.
Here are the questions that I have typed up in a Word Document for Cardiac Surgeons. Perhaps they will be helpful to you and also I would welcome any additions for my next consult or if you have any thoughts on answers:

Questions for Cardiac Surgeons

1. If my root hasn?t reached the magic number, is there a possibility that it will never reach the magic number at which surgery is recommended?

a. In other words, can the aneurysm simply stabilize or even diminish in size? If this is the case, why should I have surgery now?

b. If this isn?t the case ? if for instance I am only a mm or so away from the magic number ? why wouldn?t I just have surgery now?

c. Are there any less invasive aneurysm repair surgeries on the horizon? If so, would this be a reason to wait?

d. Is there a real difference between 4.9 and 5.0 or is that simply an arbitrary statistical cut off? That is, is there some sort of biological difference between 4.9 and 5.0 that makes you view those measurements differently?

e. Also, as a taller person, it would figure that my aorta would be bigger. At the same time, does this mean that my aorta is under more stress?

2. What is my risk of dissection and/or rupture at the size of aneurysm I have now? What does this risk mean? Is this the percentage of people with this size aneurysm who will suffer a dissection/rupture during the course of the year?

a. What percentage of people whose aortas dissect or rupture die?

3. What limitations should I put on myself now pre-surgery (or if no surgery is planned)? What things should I avoid?

a. Running?

b. Mowing the lawn?

c. Water-skiing? Tubing?

d. Basketball?

e. Baseball?

f. Flag/touch football?

4. What limitations will I have on life post-surgery, once I am fully recovered?

a. Will I be able to run?

b. Do light weight-lifting?

c. Water-ski?

d. Basketball?

e. Play touch football that might involve some contact?

5. With a congenital heart defect does this make me more prone to other aneurysms? If so, what chance do I have that I will need to have the ascending and/or descending aortas replaced in the future?

a. If there is a high chance that these will have to be replaced, does it make sense to replace them now?

b. What about other blood vessels? Are they more prone to aneurysms? Should these be checked?

6. Should I be checked for Marfans or marfanoid like disease/syndrome?

7. If I have valve sparing surgery, what are the chances that I will have to have surgery again?

a. What sort of timeline are we talking about? If there is a 50% chance I will need to have my valve replaced are we talking in 10, 20, or 30 years?

b. What sorts of less invasive valve-replacement surgeries are on the horizon?

8. What are the potential downsides to the valve-sparing surgery?

9. Should I be on beta-blockers pre-surgery to prevent stress on the valve and root? Will I or should I be on the post-surgically? If so, for how long?

10. What are the real limitations on life with Coumadin?

11. What are the various risks of surgery?

a. Why do people die from this surgery?

b. What is the risk of stroke?

c. What is the risk of paralysis?

12. How many of this particular surgery have you done? What is your success rate?

13. What about my distance from the Cleveland Clinic? Is this a problem for post-operative care?

14. Should I consider a new cardiologist given that this current one has not had me do the same test each time and this is causing a problem?

15. If you were sending a family member with this exact condition to have surgery would you feel comfortable sending him here?

a. What about to Amar Bafi at the WHC?

b. What about to Duke Cameron at Hopkins?

16. What if anything are the downsides to my doing the surgery with Cameron or Bafi closer to home?

17. If you had the choice at age 31 among valve-sparing surgery, a replacement with a biological valve, a replacement with a homografts, or a replacement with a mechanical valve which would you choose?

18. Is there a possibility that biological valves may last longer than previously thought? Is there a way to extend the lifetime of these?

a. Is there a possibility that in 15 years the way to replace a valve may be less invasive so that choosing a biological valve may make more sense?

19. What are the various limitations for each type of valve in terms of lifestyle?

a. By this I mean, what sorts of activities, sports, etc. will I be free or not free to pursue with each type of valve?

20. Is the homograft valve and Ross Procedure even a possibility for me?

21. I have read that the Ross Procedure has had some complications. Have those been fixed or is the procedure too experimental still?

22. How long will I be on the operating table?

23. What will my recovery be like?

24. If there is a possibility of aneurysms forming in the ascending and descending aorta going forward, would it make sense to replace the whole darn thing right now?

a. Why or why not?

25. What dietary restrictions, if any, should I be on?

a. Can I drink coffee? How much?

b. Alcohol? How much?

c. Any thing else?

26. At various times I have had weird muscle pulls? For instance a chest wall muscle pull for no apparent reason back in the summer of 2004. It was very, very painful. Could this be a connective tissue issue?
 
I finally met someone more into information overload that I am. Good questions. Several the surgeon or cardio. will not be able to answer defenitively. Still lots of unknowns and differences in individuals. I don't think you will find a surgeon that would reccomed replacing the whole asending ,descending and arch. Thay would be viewed as wreckless if not malpratice. However, the fact that you are asking them will alert them that you understand your condition and are looking for the best answers. I also would not worry about rehab away from CC, The only reasons I am not going there is we have a great hospital and surgeon 3 hours away and my family can make the trip. I also have relatives in the St louis area that will help. Otherwise if I were to go any where else it would be CC. There are several good hospitals and doctors but CC is the best,
I have the added problem of AS but my AA is only 4.3 and I am not about to have OHS and not have that addressed.

Have you ever had a cath or have they told you the valve area of your aortic valve?
 
You probably did not watch "Big Bang" last night, but one character made up a very long questionaire for his friends to fill out. They did not fill it all out. Maybe, as we computer people do, you might make branches when certain questions are answered yes or no. Or better yet, move that one question up to number 1 and, if answered "yes" let it go at that.

I have known Marfan people whose aneurysms got smaller from taking Cozaar, but they were in the 3 cm range, not the over 4.5 range. My aneurysm stabilized, but I did NONE of the physical activities on your list.

I am thinking God has a different plan for your life than you have. :confused:

Still praying for you and yours!
 
Maryka said:
I am thinking God has a different plan for your life than you have. :confused:

Still praying for you and yours!
Click to expand...

I think he does too. I appreciate the prayers! And I will call one of these days neighbor. One lesson I have learned in all this: I am not in charge of my life. I cannot control everything.
 
I have had LONG experience with many, many doctors over the years of taking care of and being the advocate for my husband through his multiple medical conditions.

I can tell you that you won't find many that will be able to spend hours of their time answering questions for you. This is especially true of surgeons whose time is extremely limited.

The best thing for you to do is to go over, and over your list and either eliminate some of the questions, or consolidate them. Give some thought of which ones you are asking because they are very important to you, and which ones you are asking that are not as important.

I can tell you that lawyers are men of words. I can say that because my dad was one, his brother was one, his cousin was one, and I grew up in a household with verbose conversations and multitudinous questions that went on and on and on, they were also politicians which made it all much worse. It was a source of great enjoyment. Debating things that were miniscule was the most fun.

:D

Doctors are men of actions. Yes, they will be kind and answer whatever they can, but keep this all in mind when you draw up your revised list.

I found that anything more than ONE page double spaced, freaked most of them out.
 
I cannot answer a lot of your questions, but I can attest to a very successful AVR by Dr. Bafi at Washington Hospital Center (WHC). I had to do some persuading to have him implant an On-X versus St Jude (the standard valve that WHC uses), but he gave me what I wanted. I think Dr. Bafi and the whole Washington Hospital Center experience was top notch, although I slept through the whole operation (lazy me!). Wait until you wake up in the Cardiovascular Recovery Room (CVRR); that's when your new life begins.

If I was you I'd stay close to home; you can get an excellent outcome right in your own backyard. You'll be close to WHC for follow up checkups or if you run into any complications, plus they have Cardiac Rehab. WHC knows their stuff when it comes to Cardiac surgery.
 
Nancy said:
I have had LONG experience with many, many doctors over the years of taking care of and being the advocate for my husband through his multiple medical conditions.

I can tell you that you won't find many that will be able to spend hours of their time answering questions for you. This is especially true of surgeons whose time is extremely limited.

The best thing for you to do is to go over, and over your list and either eliminate some of the questions, or consolidate them. Give some thought of which ones you are asking because they are very important to you, and which ones you are asking that are not as important.

I can tell you that lawyers are men of words. I can say that because my dad was one, his brother was one, his cousin was one, and I grew up in a household with verbose conversations and multitudinous questions that went on and on and on, they were also politicians which made it all much worse. It was a source of great enjoyment. Debating things that were miniscule was the most fun.

:D

Doctors are men of actions. Yes, they will be kind and answer whatever they can, but keep this all in mind when you draw up your revised list.

I found that anything more than ONE page double spaced, freaked most of them out.
Click to expand...

Having dealt with many docs and going thru multiple heart surgeries with my son, I have to agree with Nancy's advice. There is a sticky at the top of I think the pre surgery forum about questions to ask the surgeon, not all of them apply but I think the origonal list as well as the suggestions in that thread are a good place to start.
 
Ross said:
Be sure to take a tape recorder too. You'd be surprised at how dumb you become in front of them.
Click to expand...

Yes! I thought it was just me! I always seem to lose my resolve, and end up stuttering and simpering and forgetting all the questions I wanted to ask.
Last time hubby came with me and took notes, which he later reorganized into bullet points, which STILL comes in handy, I keep it in my purse!

I must remember to ask that, if he is still recommending waiting: Would YOU wait if you had one of these?!
 
After reviewing your questionaire I was also reminded of the the "Big Bang" program. I certainly do not minimize your concerns, but many of these questions have no answers. I agree with Nancy and Lynn, I doubt that any doctor will take the time necessary to answer each of these questions...even if he could. Physicians can not predict what the future holds for any of us.
 
CD Many of these can be researched here and on the web. Yes the list is to long. Cut it to your top 10 or 12 and leave off a....z Example when you ask for limitations before and after surgery they will tell you. No need for running, football ect. The surgeon could have you fixed in the time it will take to answer all these questions. We are talking about surgery that is not really been around that long. No one can give you all the predictions you want. Like the rest of life there are no guarantees.
 
You will also have to work your way into getting in shape again after surgery, and it will take quite a while. Along the way, you will learn how your body is adjusting to the "new" you.

Many of your questions revolve around athletic things, so it would probably be a very good thing to go to cardiac rehab after surgery. The PT pros there will give you many ideas about how your body is doing, and suggestions about how to improve.

Your doctor will answer many of your questions with generalities, and I can tell you that when I brought in a long list of questions about Joe, the doctor just put them into his file folder, and didn't even look at them.

If I brought in a short list, then they at least got eyes on them.

They will have their own method of explaining things to you, they've done this over and over and over before. They are very good about hitting all the salient points, then after that they might allow a few minutes for your own questions, but not a long time.
 
I agree that the list of questions is way too long and the questions are too general in nature, particularly for a surgeon.

I got a bill for my pre-op visit with my surgeon and it was not inexpensive. Fortunately I had good insurance that covered most everything. Surgeons are very busy and you don't want to waste their time.

A lot of your questions are generic questions that can be researched on the Internet, or are more geared for a cardiologist than a surgeon. I believe that the questions you would ask the surgeon would be more related to the surgery, type and brand of valve, and the immediate post-op period. Just about everything else you should either research on your own or ask your primary care physician or cardiologist. The questions related to post-op exercise can be brought up when you're in cardiac rehab.
 
Usually i have my questions written down but my cardio and surgeon
never did mind i used a small handheld recorder to their answers cus remembering all they said i wouldnot have by the time i got outta their office to my car.:confused:I find it handy to go back and review if need be,then i can't go wrong;)

Just a suggestion if it helps you out more.

zipper2 (DEB)
 
YEP, too many Questions.

My guess is that NO Surgeon would answer all of those questions.

From what I have read here, the answer to Question 2.a.
(What percentage of people die from a disected or ruptured aorta) is:

MORE THAN 90%, maybe even 95%.
 
ALCapshaw2 said:
YEP, too many Questions.

My guess is that NO Surgeon would answer all of those questions.

From what I have read here, the answer to Question 2.a.
(What percentage of people die from a disected or ruptured aorta) is:

MORE THAN 90%, maybe even 95%.
Click to expand...

Thanks for the suggestions. I've pared it down and will do more cutting.

I read a research article yesterday that said 25% of those who dissect die. Is that too low? I can try to track that down. I was surprised that so many lived -- it seemed low.
 
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