Dr Says its Time for AVR

[SuzanneSLO]

First, let me say thank you. I have been reading these boards daily in the last month after my cardiologist told me that it was time for an aortic valve replacement.

Second, my history: I was told I had a heart murmur when I was 17. 15 years later, I had my first echo and was told the murmur was a bicuspid aortic valve. My cardio at the time said that I would need surgery eventually but that it would be decades before it was needed.

About 9 years ago, I became aware that the bicuspid valve was causing moderate regurgitation. In December, 2012, my echo showed that the regurgitation had become severe and that the heart was somewhat enlarged. My primary physician recommended continuing to monitor it with twice yearly echos but I decided it was time to see a cardiologist again.

In March, my new cardiologist confirmed that the regurgitation was severe and that there was some enlargement of the heart. He also saw moderate stenosis. He recommended that it was time for a new valve.

I have since had a cath and a CT. The cath showed no other problems. The CT showed that my aorta was 4.8.

I am now, and have always been, symptom free.

Now I am looking for a hospital and a surgeon. I live in a relatively small town, halfway between SF and LA. As a result, either metropolitan area will be at least a 3.5 hour drive with no traffic.

My local hospital has been named one of the Top 50 Cardiovascular Hospitals in the country, according to an annual study released by Thomson Reuters, which compared it against other community hospitals in its peer group. However, the ranking is based on procedures other than valve replacements. According to Leapfrog, the hospital did 57 AVRs in the last reporting period. My cardiologist said not to worry about the number of procedures.

I have an appointment in a few weeks with a highly recommended local surgeon, but I think I should talk to at least one more surgeon out of the area. In addition to the local surgeon, my cardiologist also recommended Dr. Luis Castro of Sequoia Hospital in Redwood City. Does anyone have any feedback on him?

Before my last appointment with my cardio, I was thinking about talking with Dr. Richard Shemin at UCLA and/or Dr. Craig Miller at Stanford Hospital. I am now re-thinking this as my cardio thought I would do better at a non-teaching hospital.

I would appreciate any suggestions you might have to help guide me through these decisions. -- Suzanne

P.S. -- I have always been a Tom Petty fan and never more than recently. As he said "the waiting is the hardest part ..." and "she's going to listen to her heart; it's going to tell her what to do..."

 

[Gail in Ca]

Dr. Miller has done my last 2 surgeries and I have come through with flying colors. I don't have a problem with teaching hospitals, obviously!

 

[AZ Don]

When I met with my surgeon he pointed out that he will not be teaching. He will be doing my surgery himself and will be focused exclusively on me. He does 50-60 major aorta surgeries every year and is listed in US News as being in the top 10% of his field. I felt that each of these criteria were important - focus, experience, and skill. I did have a surgery years ago at a teaching hospital with a top Dr. Can't say it was related to teaching or not, but the surgery could have been done better - I had complications.

Sounds like you have a lot of choices. If I were you I would consider the local hospital if you find a Dr. that is highly rated. Otherwise I think I would look for a combination of highly ranked hospital and Dr. Between SF and LA there are probably many. Cedars Sinai is a name that has often come up in my research on aortic disease.

Still ratings aren't everything. Our local top rated hospital nearly killed my wife some years back. Recently I had a surgery at a C rated hospital (with a top rated Dr) and they couldn't have done a better job.

 

[canon4me]

My avr surgery and aneurysm repair is scheduled for 6/6/2013. I'm hopping on an airplane at Omaha and flying to the Cleveland Clinic which has the reputation of being the top heart hospital in the country, if not the world. I'm not telling you what to do, but I would say don't be afraid to jump on a plane and venture out of your area if it means a better outcome. The hospital in the town I live in is considered to be one of the top 100 cardiac hospitals in the country and they DON'T EVEN PERFORM VALVE REPLACEMENTS! Go figure. Good luck in wherever you choose!

 

[kimcdougc]

I interviewed (3) doctors before choosing Dr. Barnhart, Swedish Hospital Cherry Hill, Seattle, WA. One dr was at my local hospital, one was at the university of Washington medical center and Dr. Barnhart. After talking to them all extensively, I chose the one that was up to date about the On-x valve. He "educated me better than the others". I liked his personality and his bedside manner. His experience by doing 1000's of AVR successfully didn't hurt either. Good luck in your search.

 

[sood]

Sorry to hear about your troubles.

Check my signature for surgeon and hospital. They are non-teaching. The new hospital with private rooms for all patients and 18 surgical rooms was just built on an adjacent lot a couple years ago. Look up CABG reports from California. They will give you surgeon and hospital data on bypass surgery and mortality numbers. The staff at sharp is also amazing.

 

[big_L]

I did ask my cardiologist about the option of asking that no 'students' perform any part of my procedure. He said that is absolutely an option and not a problem. You could check into that.

Looks like I'm going to do Amtrak from near my home (70 miles) to Kansas City for the surgery. That way my spouse isn't trying to drive after all the emotional and physical upheaval she'll have been through. That way I can get up and walk around and she can relax and not worry about the road. Maybe Amtrak is an option for you?

I did look at patient transport companies. It's an option, but wow, it's expensive. Both quotes were ~$3500 for a 350 mile trip - or roughly $10 per mile.

Good luck - I'd certainly opt for the bigger city - higher volume hospital. You have options for getting back home.

 

[SuzanneSLO]

Thank you for all your helpful responses.

Gaii in CA: Thank you for recommendation for Dr. Miller. He remains on my short list.

AZDon: As you said, ratings are not everything. I am finding that a hospital highly rate in one place may not be highly rated in other places. It makes my head hurt!

canon4me: I thought about Cleveland. However, I don't trust the commuter jet service from our local airport due to a long history of delays. This means I would literally have to drive past UCLA or Stanford to get to a hub airport to fly to Cleveland. Unless I find out that my situation is more complicated than I currently think it is, I think that there are options in CA which will meet my needs.

KimCDougC: I feel better knowing that you spoke with 3 surgeons before making your decision. I will probably be doing the same.

sood: I looked into Sharp Memorial and was very impressed with their facilities. It is great to see a hospital that understands treatment starts with the patient but includes the family. At this time, I think we can find a good alternative closer to home, but will keep Dr. Adamson and Sharp Memorial on my list of possibilites.

big_L: I am glad that Amtrak is going to work for you to solve your transportation problems. In my area, we use Amtrak all the time to head south towards LA but not so often to head north to the SF Bay Area. The best hospitals in the SF Bay Area are on the Pennisula and thus are not well served by Amtrak which runs through the East Bay.

Again, thank you all. -- Suzanne

 

[Gail in Ca]

I hope you will meet with Dr. Miller. He is great. I last saw him in November as I wanted my sternal wires removed. He is very much in demand. While I waited in his office, after we had said hello, another doc needed his opinion on something and I was okay with waiting for him to address the issue. As far as a teaching hospital, he has done 2 surgeries for me, and has only used the chief surgical resident both times as his assistant. Both times, these men were going out into the world within weeks of helping with my surgery. They were not young guys. They had been hand picked by Dr Miller to assist him. How cool that they learned so much from Dr. Miller. My last surgery was a 2 surgeon job, and the chief surgical resident worked with Dr. Miller. He was present the whole surgery. I have been extremely happy with my results. My last being my 3rd, Dr. Miller was very concerned about scar tissue and told me upfront about his concerns. It was a very long, complicated surgery, but I awoke feeling like I could walk the halls! I was out of the hospital in 6 days. The nurse supervisor suggested I go at 5 days, but I requested another day, and got it. My recovery was very good. I was, after all, 54!

 

[DanielB]

Suzanne, I can second sood's recommendation for Dr. Adamsom and Sharp Memorial Hospital in San Diego. I had my AVR replacement done by Dr. Adamson at Sharp Memorial and would use him again if I needed to (I hope not!). One thing that I really liked was not only the credentials and the personality of the surgeon, but the team around him and the facilities at the hospital. All top notch, including the nursing care on the cardiology floor. Being in California, you certainly have many great choices and it sounds like you're doing a good job of finding one you're comfortable with.

 

[missaviator]

I third sood's recommendation, I am going in for my second DVR with Dr. Dembitsky, Dr. Adamson assisted. (Sharps Memorial)

Praying you will find the right fit for you and recover at top speed

 

[Heather Anne]

My cardiologist, Dr. Schiller (with UCSF), sends about half his AVR patients to Dr. Miller, and the other half to Dr. Merrick, the head of adult cardiothoracic surgery at UCSF. He makes the decision solely on geography, as he thinks both are fantastic (I'm going with Dr. Merrick, because I live north of SF).

Anyway, I think you can consider that yet another endorsement of Dr. Miller!

 

[SuzanneSLO]

I am meeting with Dr. Castro at Seqouia Hospital in Redwood City today, then with a local surgeon in my home town tomorrow. After that, I will ave a better feeling for whether I need more input and need to see other surgeons.
Thank you everyone for your thoughts and advice. -- Suzanne

 

[kimcdougc]

Good luck suzanneSLO in choosing your Dr. Let us know how it goes. - Kim

 

[SuzanneSLO]

Thanks for the good wishes!
My meeting with Dr. Castro was great. It was almost everything I could have hoped for. He really focused on education and explaining what he thought needed to be done and why. The only down-side was that he was really comfortable with the St Jude's valve and saw no reason to switch to On-X. My preference is to go with a package: surgeon, hospital and valve. If I choose mechanical (and I may not), and Dr. Castro, I will go with the St. Jude's.

Tomorrow I will see the local surgeon who operates at a hospital 3.5 hours closer to my home. -- Suzanne

 

[kimcdougc]

Suzanneslo,

You will know the right Dr. when you meet them. I choose the 3rd. Dr. I went to. He was the oldest, but the most up to date about the valves that were my choice. I love the way he educated me and his bedside manner. Can't hurt he has done 1000's and 1000's of AVR's. Good luck tomorrow! Will keep you in my prayers. - Kim

______________________________________________________________________________________________________________________________________________
In the waiting room. AVR May 23, 2013. On-x valve. Dr. Barnhart at Swedish (Cherry Hill location), Seattle, WA

 

[SuzanneSLO]

Kim: Again, thank you for your prayers and support.

I have now meet surgeon #2 (Dr. Faber) and liked him as well. Some things he did, I liked better than Dr. Castro. He actually did a quick exam, as well as reading my tests. The exam revealed nothing new, but it did help me feel like I was more than a chart.

He did a good job with the education side and seems to have a good bedside manner.

One thing I didn't like was how scathing Dr. Faber was in describing the On-X value (he uses a St. Judes). I would expect that the surgeon would have great things to say about the valve he prefers, but I didn't see the need to suggest that the On-X is inferior and not a viable option. Kim, I know that On-X is your choice (it was my first choice for mechanical as well) and many people on this board appear very satisfied.

One thing that confuses me is the whole "minimally invasive" issue. Dr. Castro said he plans to do a mini-sternotomy with about a 3-4 inch incision. Because my ascending aorta needs to be repaired, the incision will be fairly high on my chest. He thinks it is possible but unlikely I will need a blood transfusion even though I have chronic anemia. He expects the surgery to be about 2.25 hours.

Dr. Faber expects to use a 6" or greater incision. He also told me that "no doctor can repair the aorta and replace the AV with minimally invasive" surgery, whichis probably true for a mini-thoracotomy. He expects I will need a blood transfusion due to my anemia. He expects the surgery to be about 3.25 hours.

Based on this, I could choose the "minimally invasive option" and probably have just about the same size scar. Dr. Castro certainly painted a more rosy picture of the surgery, but Dr. Faber's description now has me second guessing as to whether the description is too rosy.

Dr. Faber does seem to have significant experience with valve replacements, having done about 1000 over his 20 year career. It does mean he does less than 100 per year. I think that Dr. Castro does at least twice that.

Dr. Faber will operate 10 minutes from my house and Dr. Castro will operate 3.5 hours away.

The good thing is that either option will be fine. The bad thing is I need to make a choice, schedule the surgery and get out of the waiting room and on with my life!

Thanks to you all for "listening"! -- Suzanne

 

[Pat J]

I was supposed to have the mini, but my heart didn't restart so I got the full strenotomy. I would want the most experienced surgeon with the best outcomes no matter how far I had to drive. You only have to make the trip twice and then your local cardiologist is who you see. I drove 2 hours to Johns Hopkins.

 

[Heather Anne]

Oy, the minimally invasive conundrum! Here's what my cardiologist said about that (keep in mind I have a perfectly normal aorta so I'm only getting the AVR): the full sternotomy involves only 2-3 inches more of an incision than the minimally invasive option, but the full incision gives the surgeon better access and a better view of what's going on and, my doc says, that makes it less risky. He's very anti-risk, which I appreciate, and would never advise a patient to go through a riskier surgery just to have a smaller scar and a slightly shorter recovery period.

I was convinced. So they'll be cracking me open like a crab in August.

Regarding the distance: I agree, you shouldn't let distance be the deciding factor, but if, like me, you have an entire family (including children that would have to miss school) that would have to come with you and stay in hotels, etc., were you to go too far away, I could see it being a consideration.

Good luck to you -- you will feel much better when you've made the decision, scheduled the operation, and can start with the planning and stuff.

 

[SuzanneSLO]

Heather Anne: My cardiologist said the same thing to me that yours did to you! One the other hand, Dr. Castro deos not consider it more risky because he does it this way for just about every surgery he does every day.

After a night of thinking (and luckily some sleep as well), I have narrowed it down to the following choices:

Option A: Tissue valve with Dr. Castro out of town. If I am likely to have another surgery, I would like the Dr. doing the first one to attempt to minimize the scaring. In addtion, Dr. Castro is very experienced with re-operations, so he could do my second one in 15 or so years.

Option B: Mechanical valve with Dr. Faber in town. With a mechanical and the ACT it requries, I am more interested in my cardiologist being part of the team through the surgery. My cardiologist already has had several conversations with Dr. Faber about my treatment and his office is physically connected to the local hospital. With ACT, I want the transistion from the hospital to the caridologist to be short pass not a "hail mary".

I plan to make a decision today and schedule surgery for early June. I agree with you that I feel much better having made the decision.

Thanks for all your thoughts and insight. -- Suzanne