Doctor and facility question.

[Superman]

Long time reader and first time poster.

Looks like I'm heading for an aortic graft to replace an ascending aortic aneurysm. In 2008 my aorta was at 3.2 cm. On September 3 I had an echo that showed 4.3 cm. The PA that I saw indicated that they would do another echo next year, not knowing what it was at last year, so I pressed. Given the rate of change, I wanted a CT and more frequent follow up. The CT was done and showed 4.9 cm with two aneurysm bulges. So it's either moving really fast, or the echos were way off.

I have a meeting with the surgeon scheduled for Monday, October 5. I'm hoping that they replace my 19 year old St. Jude at the same time. Might as well get all new gear while they're poking around in there.

I'm wondering what kind of reputation the Fred and Lena Meijer Heart Center in Grand Rapids, MI - and more specifically, Dr. Robert Hooker have nationally. Of course everything local is positive because it's in our community. I haven't found anything online on him though (good or bad).

I'm 36, a friend who is 38 just had his valve and aorta replaced in June by Dr. Hooker and everything went fine. Dr. Hooker pushed a tissue valve with him and was very optimistic about the new catheter procedure being ready by the time the tissue valve wore out. My friend also plays competitive fast pitch softball - so that could have been an influence on the surgeons recommendation.

I'm very used to my click and find it quite reassuring. I've had the valve and have been on warfarin since I was 17. My only decision is whether I want the St. Jude valve/graft one piece unit or the On-X with a seperate graft. However, I'm going to try to control my bias and hear what the surgeon recommends.

I bolded my main question - but thoughts on the rest of the post are welcome as well.

 

[Lisa in Katy]

Welcome! I don't know anything about the hospital or physician, but are these Meijers the same family as Meijer Thrifty Acres? My husband grew up in Spring Lake and we went there once when visiting - long before the SuperWalmart days. It was quite impressive!

Plenty of us have had surgery at the lesser heart centers and had great results. It depends on the surgeon. Find out where and when he was trained, how many of this particular surgery he's done, and see if you can talk to a patient or two. If you are comfortable with him, go for it.

 

[Superbob]

Sounds like with the pace of growth of the aneurysm, you are on the pathway to surgery. But you know that; you are obviously well informed.

I don't have any information on the doctor or facility, but just wanted to pass along my best wishes and hearty welcome to the forum -- one "superhero" to another.

Sounds like you have a good handle on what type of replacement best suits you, but I am sure you can get all sorts of perspectives on that here.

Look forward to your posts....

 

[Marcia58]

I don't know the dr., but my mom had emergency thoracic surgery and a 6-week stay on Heart-4 of the Meijer Center. Butterworth Hospital (which Meijer is a part of) was a wonderful place for her, and saved her life, we believe.

Check out info on Renucci House for your family.

 

[tobagotwo]

Just want to add my two cents that you seem well researched and your process is very well thought out. I would also want them to look at replacing the valve, even though it's mechanical. It pushes back the specter of replacement for biological growth, and may allow you to "upgrade," if they're willing to do the sleeve attachment in situ.

I would consider requesting another echo from the same people who did it before, so you can have apples-to-apples regarding the growth rate (even though the actual measurement may not agree). If it's moved much on the new echo since Sept 3rd, you should consider yourself in a very limited window. They can justify it as a recheck, based on the disparity of the CT and echo results, and you'll have a better idea whether its a technical disagreement or a very fast-moving aneurysm.

Either way, it appears to be time to address it with a surgeon, as it's moving right along. There is only the question of whether its size is advancing in months or in weeks with which to determine its criticality and immediacy.

Best wishes,

 

[ALCapshaw2]

Some Questions for you and your Surgeon:

Did you have a BiCuspid (native) Aortic Valve?

Do you have a Connective Tissue Disorder as a contributing factor in your Aortic Aneurism?

How much Experience does this Surgeon have performing the procedures YOU will need? If much less than 100/year, I would be Surgeon Shopping.

Does this surgeon know how to recognize and treat connective tissue disorders? Some of our members had to have Emergency Re-Do Surgeries because their valves were coming unstitched due to issues with defective tissues not holding the stitches from 'less experienced local surgeon(s)'.

If you go to a Hospital that does 99% Bypass Surgery, will the Nurses, Anesthesiologist, and other Support Staff know how to recognize Problems that might arise in a Valve / Aorta Replacement Patient?

As you can probably tell, I AM Biased in Favor of using Major Heart Hospitals and Surgeons with LOTS of Experience performing the procedure(s) YOU will need for Complex Heart Surgeries such as you are facing.

'AL Capshaw'

 

[Superman]

ALCapshaw2, I was looking forward to your reply.

Regarding the first two questions, the answer is yes to both. My valve was both bicuspid and stenotic from infancy. I also had a strong murmur (regurgitation). They managed to wait until I stopped growing (or close to it) for my first replacement, but that was with checkups every 6 months, no phys ed at school, no competitive sports, and even a 20 lb weight restriction for a long time. I think my parents did that to reduce the number of OHS I would have to face.

If I was more equipped to be my own advocate - I might have opted for surgery sooner so I could have a bit more normal of a childhood, but that's in the past now. I do have a 25k run under my belt, so I have been able to enjoy some more freedom since the initial replacement. Right now I'm just on pins and needles wondering how much time is left on the bomb I'm walking around with. Taking it very easy until this gets fixed.

My understanding of a congenital bicuspid aortic valve is that the connective tissue is an issue for the majority of individuals. They don't always present at the same time as the valve, but it will likely be an issue at some point. I do not, however, have Marfan's or any of the more obvious presentations, that I'm aware of.

I will bring your other questions to my consultation. I'm guessing these cardiothoracic surgeons aren't to big of fans of us repeat customers. We don't just take their word for it.

I'm under the impression that in this practice, this is the valve / aorta guy. Either that, or it's just a coincidence that my co-workers husband and I were referred to the same surgeon four months apart.

Thanks everyone for your responses. The more opinions and options to consider, the better.

 

[Superman]

There is only the question of whether its size is advancing in months or in weeks with which to determine its criticality and immediacy.

Best wishes,

I'm just going to assume weeks and get it done. It's not like it's going to shrink dramatically on it's own any time soon.

What is, "The sleeve attachment in situ"?

Thanks for the feedback.

 

[tobagotwo]

Great attitude and approach in my book. It's time when it's time, as it won't get any better on its own. You're mentally there. Now it's all proving your point and waiting.

As far as the other, sorry to have made confusing something you probably already knew. If they go with the On-X, they would sew the aorta-replacing sleeve to the valve during the operation, as opposed to the St. Jude premade module. Some surgeons don't like to do that with the patient on the pump, as they feel rushed, or they don't have the experience to feel confident.

Word is that On-X is working on a premade module. Timing never works out for me, either.

Stay strong and move forward,

 

[ALCapshaw2]

As a followup to my previous post, some of the Major Heart Hospitals close to you would be

UofM in Ann Arbor, MI
Beaumont in Royal Oak, MI
Cleveland Clinic in OH
Mayo Clinic in Rochester, MN
Northwestern near Chicago, IL

Unfortunately the only Aortia Surgery Specialists I know of at those institutions are Dr. Sundt at Mayo Clinic. He studied under the famous Dr. Kouchoukos who still practices in MO (I just posted his contact info in another thread - do a Search for Kouchoukos to find the details).

The other is Dr. McCarthy at Northwestern, Ross's all-time favorite heart surgeon who he claims was "stolen" from Cleveland Clinic.

'AL Capshaw'

 

[Superman]

'AL Capshaw' (Go Blue! ....thinking football, not necessarily OHS)

I'm a Spartan fan and quite happy today! Although overtime probably wasn't good for me.

 

[Lisa in Katy]

I think trying to find a surgeon who regularly does 100 thoracic aortic aneurysm repairs in a year could prove difficult. According to the Cleveland Clinic website:

"Cleveland Clinic surgeons have considerable experience in complex aortic operations, performing over 1,000 aortic procedures in 2005. Procedures include ascending aorta, aortic arch, descending aorta, thoracoabdominal repairs, and thoracic aorta endovascular stent graft procedures."

If all combined CC CV surgeons only did 1000 various aortic procedures total, my guess is that few of them did 100 of any particular procedure. I'm not sure how many surgeons they have on staff, but I assume it's more than 10. I think there are only about 10,000 aortic repairs in the US in any given year.

According to Leapfrog, which publishes nationally recognized quality measures used by hospitals and managed care companies, surgeons who do 30 abdominal aneurysms per year are considered highly qualified, and those are more common than thoracic aneurysms. I'm not sure if they have statistics for thoracic aneurysms as these just happened across my desk recently.

 

[ALCapshaw2]

Interesting data Lisa.

It would be nice to know more about the annual distribution of OHS's. Is there a source of such statistics somewhere?

Somewhere I got the impression that 90% of Heart Patients were for Coronary Artery Disease and Valvers were therefore less than 10%. I expect BAV and Aneurisms are getting into the 1% range and that the Local Bypass Surgeons rarely see these kinds of patients.
I was told that even the Top Surgeons only see a few Radiation Damaged patients per year. I guess that begs the question: "Have you ever performed OHS on a radiation damaged patient"? :-(((

Dr. Paul Stelzer reports 400 Ross procedures for his career and I believe he is the Most Prolific RP Surgeon. It's all a matter of perspective...

 

[Lisa in Katy]

I have access to data that I can't share, but The Leapfrog Group has data on hospitals. Most of it is self-reported, but they are highly respected.

According to the AHA:

In 2006 in the United States, these procedures were performed:

Valve replacements 104,000
Bypass (cardiac revascularization) 448,000
Heart transplants (performed in 2007) 2,210
Total open-heart procedures 694,000

So valve replacements are actually pretty common, about 15% of the total. Bypass is obviously more common, but only about 65% of the total. I assume that aortic aneurysm repairs would fall into the 150,000 procedures that aren't specified, along with the procedures to repair a variety of congenital defects.

 

[ALCapshaw2]

Thanks for sharing that data Lisa.

I'm thinking my 90% number for CAD patients came from a Cardiologist, and that there are MANY CAD patients who are managed Medically or with Angioplasty and more recently, Stents. These patients of course would not show up in the OHS statistics. On that basis, CAD patients would represent a larger percentage of Cardiology Patients than OHS Patients (i.e. distributions would differ between Cardiologists and Surgeons). Interesting insight.

'AL'

 

[Cozycat]

Al, Lisa, Superman and tobagotwo, you have presented an interesting discussion above. Hopefully I will never need the info, but once I started on this thread just couldn't stop before I read it all. Thanks!

Midge

 

[Lynlw]

I was reading the 2008 CCF report and was surprised to see they do more Valve surgeries than CABGs Altho they DO do alot of stents in the cath lab. http://my.clevelandclinic.org/Documents/heart/2008_Heart_and_Vascular_Outcomes.pdf
"Cleveland Clinic has one of the nation’s most experienced cardiac surgery programs and
performs a variety of cardiac operations. Isolated valve and combined valve operations
accounted for 49 percent of the total cardiac surgical volume in 2008."

Cardiac Surgery
Cardiac Surgeries 3,606
Valve Surgeries 2,355
Coronary Artery Bypass Grafting (CABG - Isolated and Concomitant) 1,367
Surgeries for Hypertrophic Cardiomyopathy 168
Adult Congenital Heart Surgeries 56
Robotically Assisted Cardiac Surgeries 213

For the aorta they break down the surgeries this way
Open Ascending Aorta and Aortic Arch Repairs 610
Open Descending Aorta and Thoracoabdominal Repairs 100
Open Abdominal Aortic Aneursym Repairs 96
Endovascular Descending Aorta and Thoracoabdominal Repairs 182
Endovascular Abdominal Aortic Aneurysm Repairs 149

They have all of their stats listed like In 2008, 1,234 bioprosthetic valves, 190 mechanical valves and 66 allograft valves were used

 

[ALCapshaw2]

Lyn -

I suspect that CC prefers to take the more complex OHS cases, leaving ByPass Surgery to the (often Very Good) Regional Centers.

Our Local Hospital (Huntsville Hospital) has 4 Heart Surgeons who perform 700 to 900 Surgeries per year, mostly ByPass. I can't get them to tell me how many Valve Jobs they do but I know the do 'some'. Hsv Hosp attracts many patients from a 50 mile radius or so.

Some of our (25+) Cardiologists refer Valve Jobs locally, some to UAB in Birmingham, AL (100 miles South), and some to Vanderbilt in Nashville, TN (100 miles North).

 

[Lynlw]

Lyn -

I suspect that CC prefers to take the more complex OHS cases, leaving ByPass Surgery to the (often Very Good) Regional Centers.

Our Local Hospital (Huntsville Hospital) has 4 Heart Surgeons who perform 700 to 900 Surgeries per year, mostly ByPass. I can't get them to tell me how many Valve Jobs they do but I know the do 'some'. Hsv Hosp attracts many patients from a 50 mile radius or so.

Some of our (25+) Cardiologists refer Valve Jobs locally, some to UAB in Birmingham, AL (100 miles South), and some to Vanderbilt in Nashville, TN (100 miles North).

Its interesting, because I'm surprised they do so few of the Adult with CHD surgeries since they are usually ranked the most complex with the aristotle scores http://www.aristotleinstitute.org/scoring/BasicScore.asp, I knew they weren't usually ranked high for ped CHD (usually only do about 100 a year) especially since they lost Mee, but I thought they would be doing more Adult CHD than they are.
I guess their real specialty is aortas and valves.

I wanted to add, since they work alot with percutaneous repairs, ect, the fact they do do so many stents, probably is why their CABG OHS is lower than most would think.

 

[Superman]

So I met with the surgeon today. He didn't seem quite as concerned with a 4.9 as my wife and I are (especially with four young kids at home). He was originally recommending a follow up CT in three months and go from there. He went on to say that he has a patient that has held at 4.4 cm for 10 years and they are currently following 400 cases with enlarged aorta's. I don't know the diameter range of the cases that they are following, but I do know mine won't be shrinking any time soon and I'm no fan of putting off the inevitable. We indicated that we'd rather just get it over with since it won't be getting any smaller and it's going to have to be replaced eventually.

The forty pound weight restriction won't make me too helpful around the house, especially chasing after a five year old and an eight year old (our other two are 3 1/2 and 5 months).

The surgery is scheduled for the 15th and I will be getting a shiny new valve (looks like St. Jude with graft). He's open to doing On-X but hasn't done one before. I don't really want to be an experimental case either. Not sure if I'm having buyers remorse, but I feel kind of strange that the surgeon conceded my points about wanting to go ahead with the surgery. Guess I expected a bit more push back about following his recommendations and such.

Of course he's only got the one CT to look at, he didn't have all my recent echos to show what I think is a rapid change. He's going to talk with my cardiologist tomorrow to get more detail on that.

I saw the CT and I appear to have a rather pronounced bulge where I was hooked up to the heart / lung machine via the aorta last time.

All feedback is welcome. Am I wrong to push for surgery now? Should I go ahead with regular CT's and wait for the magic number (whatever he decides that is)?