First Surgeon Interview, I would like your input.

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J

JudithD23

Hi,

Friday we interviewed the one of two potential surgeons that may do Tom's AV replacement. The Dr. kind of put the fear in us of waiting too long to do the surgery. He says that Tom's valve has gone from the size of a quarter (or was it a half dollar) to the size of a dime. Tom had just exercised that day on our elliptical trainer and the Dr. said that he doesn't want him exercising, lifting things or doing anything that might put a strain on his heart until well after his surgery. The Dr. mentioned something about when the blood flow through the heart is so diminished because of his aortic valve stenosis, there's always a chance that the rhythm of the heart will become erratic and go into dangerous fibrillation. I don't know if I'm accurately repeating what he said, but it's close. Can this happen?

The Dr. was trained at THI under Cooley and does over 300 OHS a year with about 80 a year being specific to AVR with a success rate of 99% and an infection rate of .3%. He says that after the heart cath they'll know if Tom needs any bypass grafts, but that they'll repair his a-fib at the same time. He says his choice of valve would be pericardial bovine tissue. I had earlier spoken to the cardiac nurse from the other surgeon's office and she said that their choice of valve was also the pericardial bovine. We have an appointment to meet with this other Dr. on the 30th of this month, but we are trying to get that appointment moved up because we're thinking we have to move toward having the surgery a lot sooner than we had anticipated.

I'm not sure what question or questions I have, but does this sound legitimate to you all? I'm just wondering if we need to have the surgery asap, or if we have the luxury of interviewing this other Dr. Tom has no real symptoms yet so I'm wondering and we're both kind of shocked. Tom's cardiologist, who we've known for about two years and has the best reputation here in Placerville, very highly recommends the Dr. we've already met.

Such decisions, and I know I keep referring to "our" surgery, even though it's, of course, Tom's surgery. He's relying on me to do most of this ground work and doing the research is how I cope. I've read on the forum that while it's complex surgery, it's not that uncommon. But last night I woke up so scared.

Input would be helpful. Thanks.

Judith
 
Hi Judith,

I am too new to offer any advice but I am sure some input will appear shortly from other members of the VR family.Keep us updated on you and Tom.When your fears start getting the most of you let us know.We are there for you.


God Bless
 
I think it sounds legitimate, but I also think that the 30th isn't that far away, so I'd keep the other appointment.
I don't think the surgeon's advice about staying off the eliptical was out of order; I wouldn't want to take any chances when he's so close to having it fixed.
I hope this helps!
 
What your surgeon has said can and does happen. Will it happen to Tom, no one can say. But is sounds obvious that surgery is in the near future, and what this surgeon has said about exercising and straining, etc, should be adhered to. They have the luxury of looking at and interpreting test results, and will know exactly what they are talking about. There are parameters that surgeons look at when recommending surgery, and they are pretty standardized within their field.

The fact that he is not symptomatic does not necessarily mean that all is OK. Many people here can attest to the fact that they didn't think they were symptomatic, when if fact, they adjusted their thinking to their diminished capacities. The heart can also adjust somewhat to complication, but it does this at a price, usually enlarging to accommodate diminishing output, and that is not a good thing.

So, yes, I would certainly believe what you heard.

As the spouse of a man who was operated on many times, I can truthfully say this is indeed "our" surgery. You will be your husband's right arm as he goes through this.

Best wishes.
 
Thanks everyone so much for all the replies. Rachel I appreciate the length of your replies and all the information you communicate. It's so good that you look out for us.

We definitely spoke about the aortic root and the possibility of an aortic aneurysm. The Dr. said Tom, age 64 this Feb. 5th, has a very mildly dilated aortic root and that he didn't think it would need to be repaired. But he does those when it needs to be done. Also, Tom has his heart cath at the Sacramento hospital on Thursday and not the Placerville hospital because his cardiologist says there can be complications when doing a heart cath in someone that has severe aortic stenosis. The heart surgeon we saw said that we should have our cardiologist page him and we can all look at the heart cath together, because he will be at the hospital operating.

I have mentioned travelling to an aortic heart center to Tom often, very often, and he just doesn't want to travel, not even to Stanford which is just 3 hrs away.

I'll keep everyone updated as we move closer to a decision and maybe after we meet the next surgeon, it'll all be that much clearer what we should do.

Thanks again, Judith
 
Welcome to our world Judith. Hopefully as you and Tom read of the successes on this website, you will find some comfort and maybe even a little peace and acceptance of what needs to be done.

The Numbers you were quoted by the Surgeon sound very good, especially for a 'Local Surgeon' who probably does mostly relatively 'simple' ByPass Surgeries. Valve specialists are generally considered to be very good if they do 200/yr and most 'local surgeons' probably do less than half the number this surgeon quoted you (i.e. less than 40/yr).

Nationally the Risk of Stroke is 1% and the Risk of Mortality is 1% for First Time Surgeries in patients under age 65 so this surgeon is 'better than average'.

It is not uncommon for patients to believe they have NO symptoms, although many realize that they were symptomatic AFTER surgery when they realize how much more energy they have than before. Aortic Stenosis CAN proceed fairly rapidly so that is probably why the surgeon is recommending Sooner rather than later. Also, the longer you wait, the more damage is being done to the heart muscles and walls. With the high success rates today, it just makes more sense to 'go ahead and get fixed' to reduce the risk of a less favorable outcome.

One of our favorite sayings is:
"The Worse it Gets, the Faster it gets Worse".

The Bovine Pericardial Tissue Valve is an excellent tissue valve. It has a Proven Track Record approaching 90% durability (freedom from explant) at close to 20 years and counting. The newest versions have an "anti-calcification treatment" that is hoped to extend this durability to 25 years or more. That was my First Choice for a replacement valve but was not viable for ME because of other extenuating circumstances.

Mechanical Valves are designed to 'Never Wear Out' BUT they sometimes need to be replaced for other reasons such as Pannus Tissue Growth (which can happen with ANY valve) or stitching that works loose (generally a sign of poor tissue or surgeon error). These events have a Low Level of occurrance but 'can' happen. Mechanical Valves require Lifetime Anti-Coagulation Therapy and Monitoring. See www.warfarinfo.com for information on living with / on Coumadin / Generic Warfarin.

The STANDARD St. Jude Mechanical Valves (Masters Series) are the Gold Standard for Durability going on 30 years. See www.sjm.com for more information.

The relatively new (1996) ON-X Valves offer several technological improvements over the older valve designs that result in a lower propensity for Clot Formation and /or damage to Blood Cells. See www.onxvalves.com and www.heartvalvechoice.com for more information.

Heart Catheterizations and Angiograms have a VERY LOW 'unfavorable event' rate when performed by Cardiologists who do many of them. The numbers I heard from my local hospital (which has an EXCELLENT Cath Lab) is 1 in 1000 'events' which are mostly non-fatal. Do a SEARCH for Catheterization to find many posts on the subject. Most patients are scared before their first one (I was freaked out) and then say "No Big Deal" afterwards. I've had umpteen with only one minor event, a hematoma, because I went back to work too soon afterward).

'AL Capshaw'
 
Can't help with good info but will offer an opinion on the dilation.

If you consider that there is reduced blood flow through the valve into the aorta at present you can also assume that the pressure in the aorta is less now than it will be post surgery.

Ask the question about expected increase in dilation once the valve has been put in place and the blood flow into the aorta has increased.

For me, i'd be expecting to get the graft done at the same time and need to be convinced otherwise.

I guess thats why the others have mentioned AVR specialists rather than a general heart surgeon.

Best of luck.
 
Really good points made by everyone, and I'm understanding what you mean by the increased blood flow once the valve has been replaced and is flowing through a more normal sized valve. I'll need to followup with the first surgeon and be able to better understand the responses from the second surgeon.

Thanks,

Judith
 
Be really persistent on this as you can sometimes ask a question and get a politicians answer that skirts around the issue...keep asking the same questions until he answers it directly.

At 64 your husband certainly has outlasted me at 37 before needing surgery so his condition is much better than mine but i'd guess that he would not notice the difference between recovery from plain old valve replacement and recovery from valve and acending aorta replacement & i doubt the risk factor would be much different.

There are many on this site who have had just the valve done only to return in less than a decade to have the ascending aorta done with a second operation...i doubt he will want that in his 70's.

You have the option to just do:-

The valve alone.
The valve and the ascending aorta.
The Valve, the root and the ascending aorta

The above 3 choices can also be done with various parts, mine was done with a one piece valve, root, ascending aorta by st Jude, i had the option to use separate components.

Just remember you want solid assurances backed up with solid info and lots of them rather than just the gut feelings of the surgeon.

Best of luck with getting the answers you need to make a decision you are comfortable with. Don't worry about rushing so quick that you don't interview two surgeons, i too was told to hurry as i had a large anurysm but still took 6 weeks to see both surgeons twice and ask all my questions.

re-reading the above before i hit the submit reply button i seems a little negative but its not intended to be so. If the concensus is that only the valve needs to be done then that would be good news not bad news....just want to be sure you push the surgeon to reveal the info he is using to back that assumption up.

Regards.
 
The parameters which best characterize Aortic Stenosis are Effective Valve Area measured in Square Centimeters. Many surgeons use 1.0 to 0.8 sq cm as their 'trigger point' for recommending surgery.

The more significant parameter is the Pressure Gradient. I don't know the exact number that is considered indicative for surgery.

Judith, do you have a copy of Tom's Echocardiogram Report? Both of those numbers (and several others) should be listed on that report, hopefully along with the numbers that characterize Normal Readings.

If you do not have the report, I highly recommend getting and keeping copies of all of his Test Results. I chart my (umpteen) Echocardiogram reports on a spread sheet

'AL Capshaw'
 
Okay, I feel like I'm starting from square one. I have finally kind of gotten my husband convinced that we shouldn't be taking the "path of least resistance" regarding his heart and which surgeon to chose and how far to travel for the best Dr so we hopefully only have to do this once. Of course there are no guarantees no matter who you use, but I want the odds in our favor. I have the CD and I'll get the written report of his CD and nuclear treadmill and start making phone calls; one to Cedars, definitely. Rachel, I still have your emails and will call Dr. Raissi's assistant and start a dialogue there. Also, has anyone heard anything about Stanford? I have a friend who lost both her parents there very unexpectedly, not in the heart area, but she was very dissatisfied with them.

If nothing else, we will consult with other Dr.s and go back to our local surgeons to reevaluate them with additional questions, and ultimately may need to travel for Tom's surgery.

Thanks for the input and if there's anything else, please feel free to help.

Judith
 
ALCapshaw2 said:
The parameters which best characterize Aortic Stenosis are Effective Valve Area measured in Square Centimeters. Many surgeons use 1.0 to 0.8 sq cm as their 'trigger point' for recommending surgery.

The more significant parameter is the Pressure Gradient. I don't know the exact number that is considered indicative for surgery.

Judith, do you have a copy of Tom's Echocardiogram Report? Both of those numbers (and several others) should be listed on that report, hopefully along with the numbers that characterize Normal Readings.

If you do not have the report, I highly recommend getting and keeping copies of all of his Test Results. I chart my (umpteen) Echocardiogram reports on a spread sheet

'AL Capshaw'


Al, We have the CD of his echo, and I will be picking up the written report of his echo today. I do remember his cardiologist saying his pressure gardient was up there. So we'll see.

Thanks,

Judith
 
Judith:
I am also 64 and had my AVR in September of last year at The Cleveland Clinic...After weighing all the possibilities (and there are many) regarding valve choice, I chose the Carpentier Edwards Bovine Pericardial Tissue Valve. I was told that my surgeon also preferred that valve considering my age....This valve should last twenty years in someone our age....

I am now four months post-op and feel terrific. My best wishes for your husband's successful AVR....
 

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