Remote Second Opinion Changes Anne’s Surgical Approach

Anne,

Thanks for sharing your story. I’m currently in a similar situation.

Great that you took a stand for yourself and got that 2nd opinion.

I’ll be doing the same.

Tim

I have a similar story. I was referred to surgeons within my Cariologist’s group and was scheduled for an aortic root replacement with an aortic valve replacement. I went for a 2nd opinion to a surgeon known for sparing valves. I was able to get a surgery date with this second surgeon and able to keep my aortic valve. I can’t say for sure I will never need a valve replacement, but as for now I have a tri-leaflette, non-leaking valve post root replacement. I am forever thankful for doing my research and getting my second opinion!

Thanks for sharing. I am in Scottsdale AZ and am about at the same juncture with a mitral valve.

Best wishes,

Barbara

Hi Anne,
So glad you got the surgery you wanted! It does pay to be your own advocate. When you say minimally invasive, I am curious to know what you mean by that. Was it a smaller incision or an incision below the breast? I had a 4 inch incision with a median sternotomy. As a young female I told my surgeon I was concerned about the incision. He listened to me and gave me a smaller one. :).

In Feb. of this year I had an Aortic valve replacement. I also questioned if I could have gone without the open sternum. I was told that it is not approved yet, still not perfected.

It is all good though, I did read Adam’s book, it was a huge help.

Thanks

This is in response to Roberta who wanted to know about my incision. It is 3″ right down the center of my sternum. It doesn’t appear to have involved any cutting of ribs and didn’t cause any instability in my chest. So far five doctors have seen my incision and, to a person, they have said “How did he do that?” Best part is that I have had no pain. From about day five after my surgery, you would never have known I had an open heart procedure unless I told you. It was like a “non-operation.” But I know he did something because I feel 120% better!

Hi Anne,

I just wanted to say that I too had my minimally invasive aortic valve replacement done on July 16, 2010!!

I was told by the first surgeon that I saw that they were going with a median sternotomy. I went for a second opinion at a hospital that performs lots of valve replacements and specializes in minimally invasive procedures. I knew that I was in the right place instantly.

Happy first birthday to us Anne!!

Trevor

Dear Anne,

Thank GOD you are fine. I am always so happy to hear when a patient makes a full recovery. Do you feel the difference in your body? I am also a candidate for AVR due to stenosis. I have met with 6 different surgeons here in New York. Mosty of them are pretty talented boys. However, all of them discouraged MICS. They say that there is too much room for error in this approach. My problem is an isolated valve, bicuspid in nature and severely stenotic. Yet, I have very little symptom with the exception of some avib. I know I need it to be done, but I am really NUTS over the splitting of my sternum. How did you come to select a surgeon at The Cleveland Clinic?

My very best to you,

Joseph
Camelot47@aol.com

Anne,

Thanks you for sharing your story with all of us.

Rhoda

Good choice. You don’t have many choice when you have Aortic Stenosis but the choices you have are very important. Over a 4 year period, I lived with the fear of open heart surgery to replace my aorta. When I was told it was time, my New Mexico doctors where anxious to preform the surgery. I hesitated since I was born in Cleveland and respect the Cleveland Clinic. The weekend of decision was filled with research and reading Adam’s book. By Monday morning I was on the phone with the C.C. making arrangements for my operation. It was the best choice for me. It is now 5 months since my 3″ minimally invasive procedure on April 13th. The decision I made helped me relax before the operation and aided in my recovery. It’s a good feeling knowing that you are in control to a point.

Anne: Thank you for your story. I have very severe aortic stenosis but a normal root. I am seeing a surgeon recommeded by my cardiologist on Tuesday, and I don’t yet know what kind of procedure he uses. I asked my cardiologist about under-the-armpit surgery (the only kind of MICS surgery I had heard about), and he said it had a higher failure rate. I was not aware that there was another type of minimally invasive surgery. I had my knees done 4 years ago MIS, and recovered better than anyone else I know, so I’d love MIS for the heart. I, too, am freaked out by the possibility of a huge chest incision. I’ve already been split open for a kidney tumor many years ago. I liked someone’s idea of suggesting a shorter incision to the surgeon. I’ll try that on Tuesday. My son’s fiance is sending my records to Brigham & Women’s for a second opinion, and I won’t know what they say for a few days.
Terry

Responding to Sandy Gilbert – I’m so glad you checked in! Yours was one of the journals I followed religiously while I was doing my research prior to surgery. I thought our situations sounded very similar and perhaps the outcomes would be the same.

I kept a journal on Adam’s website for about five weeks but then it got just embarrassing because things were TOO good. My recovery was too glitch-free to be interesting. I was sure people were sick of reading about it…

Regarding the safety of minimally invasive procedures, Cleveland Clinic is the #1 heart hospital in the country for the 16th year – per U.S.News and World Report – and they use MIS in a high percentage of their heart surgeries. What’s right with this picture? Their website shows their percentage of success for heart surgery overall and it’s higher that the national average. On a personal level, it was the right decision for me.

P.S. to Terry – My surgeon, Tomislav Mihaljevic was a surgeon and in the Cardiac Research Lab at Brigham and Women’s before his move to Cleveland Clinic.

Thank you for the comment. I’ve been doing research all weekend and found that in Florida there are several places that do MICS. I’m checking the facilities out, and if the surgeon I meet on Tuesday wants to do a huge incision, then I’m going to travel to get this done. My options are: Broward Health in Ft. Lauderdale (4 hour drive), U.F. hospital in Gainesville (4 hrs), a place in Clearwater, FL (2.5 hrs), one in Tampa (2 hrs), one in Miami (5 hrs) etc. I think I’d rather have an awful drive than an awful surgical experience.
Terry

Great comments everybody.

Just a quick thought for Terry…

Not everyone who has a median sternotomy has an “awful surgical experience”.

From what I understand, the majority of open heart procedures are still performed with a full incision. That said, many patients have excellent surgical results with a traditional sternotomy.

Adam

Thanks for sharing Anne. I live in Denver, very close to you. I had a similar experience. The cardiologists at Denver/Aurora Cardiology really wanted me to stay in Denver for my aortic valve replacement surgery. They indicated I would get better care in Denver–if I went to a distant clinic I would “just be a number.” While one of the surgeons in their group did mimimally invasive surgery, I couldn’t find out anything about his credentials, number of surgeries performed, etc.

So I started exploring the # 1 Clinic in the country, the Cleveland Clinic. Their surgeons credentials are an open book and easily accessible. My surgeon was Marc Gillinov and I was and have been VERY happy with my surgeon and his team. My recovery has been 100%.
I know another person in the Denver area who had valve surgery at CC. She was very helpful to me when I was trying to make a decision. Perhaps we should all get together sometime.

Response to Teresia – There is a Cleveland Clinic in Florida. Check their website.

Marti – Same script “just a number.” Hey, I’m in the phone book or on the internet – easy to find my phone number! Next Saturday I leave for a week in Greeley where we are having the National Golden Retriever Specialty. I am in charge of hospitality so busy, busy, busy until the first week in Oct. We expect over 1,000 dogs and who knows how many people. I almost put off my surgery until after the show but my cardiologist looked horrified so I went ahead. Now I am SO happy I did. I’ve got energy for 10 old ladies!

Anyway, I would love to get together. Give me a call and we can make plans! I’m in and out of the house all day.

Anne

Dear Trevor,

Can you tell me the name of the hospitail that you selected to do your surgery. You mentioned in your note that it was a high volume facility. Thank you, Joseph

More research findings. I found this video of a heart group in Ft. Lauderdale, FL. Those of you who live in S. Florida may be interested in seeing what the ultimate in minimally invasive valve replacement looks like: http://www.orlive.com/broward-health/videos/why-someone-would-need-minimally-invasive-aortic-valve-replacement-surgery.
On the 2nd opinion level, my records are being faxed to Brigham’s & Women’s. There’s no doubt I need the surgery, but the 2nd opinion doesn’t hurt. If nothing else it will reassure hubby and son.
Also, I’ve found out that Dr. Nayer Khouzam, the surgeon I will meet tomorrow believes in the minimal approach–the minimum size incision needed to get the job done. He does 300 heart surgeries a year, 200 of them valves. I’ve now heard from several different local doctors who recommend him highly.
My cleaning woman whom I trust completely has agreed to be with me after I get out of the hospital, and my neighbor’s pet helper will come over to help with the animals. We have 10 animals, so it’s a big job.
Things are progressing well, mostly because of Adam’s book. I took to heart his advice to draw friends around you, so thought I’m fiercely independent, now anyone who asks ‘can I help?’ I say sure and think of something, like loaning me books or coming over to keep me company after the surgery.
The toughest problem I’m facing is keeping my husband from freaking out. We were both widowed before meeting each other, and he’s understandably anxious.
Thank you, Adam, for having this blog. It helps to know there’s someone out there to share feelings with.

Hello Joseph,

I went to NYU Langone Medical Center. My surgeons name is Dr Charles F Schwartz.

Dr. Charles F. Schwartz is Assistant Professor of Cardiothoracic Surgery in the Department of Cardiothoracic Surgery at NYU Medical Center.

Trevor

Dear Trevor,

May I ask you as to how you feel today? Do you sense any difference in your overall physicality; i.e. during exercise? Are you an athlete? I am 62 years of age and have always been an athlete, tennis fanatic. Weights, jog, cycle. I’ve slowed down a bit sense the news of stenosis but overall, I feel GREAT! Still have a great deal of energy.

But forget about me, How are you doing?

Best of health,

Joseph

Hi Joseph,

I feel great myself!! There is a lot of resting and recuperation after surgery, but for two months after surgery I am feeling pretty good. I am not 100% yet, but I know that I am on my way! I’m doing just about everything except heavy exercise. I am working towards that. The cardiologist just wants me to wait another month or two, put me on the tread mill, watch my heart, and, if all looks good I have his blessing to do just about whatever I want!

I was like you pretty much asymptomatic. Only a few clues here and there. I was (and still am!) very active. I am 35 years old and I found out when I was 34. I had approx 11 months to get my facts together and make the decision. I must say I couldn’t beleive that I needed heart surgery because I felt pretty good!! I did know by virtue of my slightly elevated blood pressure (130-140 over 85) and some mild dizziness & shortness of breath during heavy
exercise that something might be wrong. Mind you I did not always have these symptoms. Weird right?

I did not have stenosis however. I had moderate to severe aortic regurgitation. I think its important to mention that my first cardiologist said that I had stenosis. That is when I contacted Adam, and he suggested getting a second opinion. Boy am I glad I did!! I ended up seeing three different cardiologists and when everyone’s information jived I knew I could trust the info I had been given. After two echo cardiograms, a TEE test, and a MRI my surgeon was convinced it was time.

P.S. My father is a USTA certified tennis coach ( for thirty years) and I have played tennis since I was 10 years old!!

Trevor

Today is the day I meet the surgeon. Yesterday I phoned his office and got a lot of information on his philosophy and procedures. His office describes him as a minimalist. He does the smallest incision possible to get the job done which is good news. I’m hoping to have a better idea of the date of surgery after this visit. I’ve also heard from 3 other doctors that he is excellent,.
In the meantime, having had great success for prior surgeries with hypnosis and post-hypnotic suggestions, I looked up the hypnotist I hadn’t seen in 25 years, wondering both if he was still in business and if his office was still accessible. SURPRISE: Yes, he’s in business and has moved his office from a downtown location–half hour drive–to the office building behind my house. Amazingly I had only to go out my back gate, cross the street, and there he was. If I weren’t so short of breath I could have been there in less than 60 seconds, but to my great surprise, it took me 5 minutes to walk that very short distance, and I was breathing hard when I got there. I told him I needed a booster shot! It was like they say about getting back on a bicycle after years. Within moments I was under and his familiar soothing voice reminded me of how to use my inner strength to control my outer actions in times of stress–and surgery.
I will post later today to let everyone know my surgery date.
Terry
Those of you who have never used hypnosis to prepare for surgery, it really is very helpful. The power of your mind to help heal your body is phenomenal.

UPDATE:
I did get the second opinion which was DO IT NOW, and turns out, the surgeon I met today is outstanding. Since I flunked the stress test, the symptoms have been accelerating. I will be going in for surgery in 3 days–on Friday. He will make an upper sternum incision which he said will be from 4 – 6 inches. Turns out the valve is categorized as ‘critical’ and he’s going to have to do some extra work to decalcify the area around it–or something to that effect. I must confess that the when he said I had been referred as critical I got a little hazy there for a few moments and didn’t absorb all the details. He expressed surprise that I got past my forties with a bicuspid valve. 71 with this valve is miraculous! He will do an echocardiogram from the top through the tube in my throat so that he doesn’t get any surprises. He did warn me that in some cases, when the calcification surrounding the valve is extensive, that I might need a pacemaker. He wants to keep me hospitalized for 7 – 9 days due to my age and the conditions with this valve. I remember in Adam’s book it said that the people with the longer hospital stays did better, so I’m not worried about that. The surgery will take 4 – 5 hours including prep and close.
Adam, thank you so much for your book since I was totally informed and knew exactly what to ask. The surgeon showed me all the possible valves, and I knew exactly what he was talking about. He gave me the pros and cons of each, made his own recommendation, and then allowed me to choose. He did say he preferred a tissue valve and that the new bovine valves are processed differently and last 20 years or so. I agreed, so that’s what I’m getting, a bovine valve.
There is an entire new heart unit at Florida Hospital South where I will have the surgery, and it has the latest equipment, so I feel safe in their hands and in his.
Now it’s just good attitude and prayer.
Will keep you posted, but don’t worry if you don’t hear from me for a couple of weeks.
Terry

Hey Terry,

Thanks for the update. I’m glad to hear you are getting more-and-more comfortable as Friday approaches.

By the way, have you thought about starting a Heart Valve Journal. It might be a good way to keep others informed about your progress during this journey. You might also meet some very nice people as well. Here’s the link if you are interested:

http://www.heart-valve-surgery.com/journals/

My thoughts and prayers are with you!

Keep on tickin!

Adam

Hi everybody,

I’m glad and reassured that all of you are out there to help each other.

I have a bicuspid aortic valve with moderate to severe stenosis, so far asymptomatic, with a widened ascending aorta (4.0).

I already started “shopping” for cardiac surgeons and surgical aproaches since I don’t know if I’ll get too sick and I won’t have energy to look for the best for me.

Last week I met with a surgeon in Boston who advised me to have the open heart surgery to fix both problems when symptomatic.

I’m concerned with having open heart surgery and I’m looking for other surgical approaches. First, I’d like to fix what is wrong and interferes with my life. Meaning, if the stenosis makes me symptomatic but my ascending aorta is wide but doesn’t have measurements to be considered an aneurysm I just won’t fix the ascending aorta.

Has any of you been in this situation? I’d like to hear what your surgeon said.

Thank you Adam for starting this blog and thank you to all of you who write their concerns, questions and experiences.

Maria

My ascending aorta was over 5.
I had varying opinions about the need for surgery as the dimensions didn’t change over nine years but eventually had the surgery as the risk had become so much lower and was now less than the risk of not having the surgery. The mortality rates I was quoted were 3% now 8% nine years ago