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Patient Dilemma: Watch and Wait? Or, Roll The Dice?

Posted by Adam Pick on October 6th, 2008

It’s a troublesome, patient dilemma..

Your primary cardiologist says, “You need valve surgery right away!” However, you’re second-opinion says, “Hmmmm… I’m not so sure about surgery just yet. I’d hold off for now.”

What are you supposed to when your first- and second-opinions ARE NOT on the same page? This is exactly what Susan is experiencing with her mother’s diagnosis. Here is Susan’s story and my thoughts:

Dear Adam,

My mother, a young 87 year old woman, is experiencing shortness of breath. After being referred to a cardiologist and having an echo-cardiogram, it was determined that she has aortic stenosis. Her only symptoms are shortness of breath. The first cardiologist wants to monitor with echos every three months. If symptoms worsen, he would not hesitate to recommend aortic valve replacement. We went for a second opinion to MGH. The cardiologist didn’t see any reason to delay, and wanted to fast track for surgery. My mother has been on Immuran for five years, treating a flesh eating disease. Her immune system is compromised and I am scared to death of infection.

Living in Boston, I am confident of receiving the best of treatment, but the dilemma is… Watch and wait? Or, roll the dice? Considering these opposing diagnoses, I am at a loss. Do you have any advice? — Susan”

MY RESPONSE TO SUSAN:

Hi Susan,

Nice to meet you and thanks for sharing your mom’s story with me…

It’s quite the dilemma when your first- and second-opinions do not create a consensus about the next steps.

That said, you may want to obtain a third opinion. This may seem extreme but I know of another patient who was in the exact same situation as your mother. His third-opinion suggested that he post-pone aortic valve replacement (which he has done) and continue to monitor the aortic stenosis. That was six months ago and the situation has not worsened.

Also, one other quick piece of advice. Having been through a challenging heart surgery and recovery, you DO NOT want to “roll the dice” in this situation. You and your mother want to feel 100% – actually make that 500% – confident in the need for surgery and your surgeon.

I hope that helps. Keep me updated!

And… Keep on tickin!

Adam Pick
Written by Adam Pick A dad, a husband and a patient, Adam Pick founded this website in 2006 to educate you about heart valve surgery from diagnosis to recovery.
You can get the latest updates about heart valve surgery from Adam at his Facebook, and Twitter pages. Click here to email him.

 


kathleen fischer says on October 7th, 2008 at 3:40 pm

Hi Adam – I am a 59 year old retired teacher and large format landscape photographer (please visit my website fischerfineart.com) who was diagnosed with aortic stenosis about a month ago. This was quite a surprise to me since I had just gotten back from the Bonneville Salt Flats where I was shooting the races and heading into the wilderness carrying 40 pounds or so of equipment. I went in for a general physical for a job I was applying for and the GP sent me for an echocardiogram. I could tell the results were iffy when the technicians suddenly became VERY nice to me. It has taken me three and one half weeks to get an appointment with a cardiologist and it’s been a sleepless time for my whole family. I am finally going on Thursday and I guess I’m asking – is the waiting for appointments normal? I purchased your book and read your blog but am a nervous wreck with the waiting. Should I look for a new doctor/hospital …. one that is a little quicker on the ‘getting in’ aspect of this journey. I live in the Chicago area where there are great hospitals and doctors, so I’m luck in that aspect.
My sister had valve replacement about 5 years ago and I also had possible rheumatic fever as a child so the tendencies are there. I’m just having trouble with the waiting. Your book is great thank you and congratulations on your pregnancy. Kathleen

 


Cindy Tarver says on October 7th, 2008 at 10:45 pm

I too am having the challenge of “other” opinions. The 1st cardiologist & surgeon said “replacement”, My mitral valve has calcification & thickening of leaflets, 100% regurgitation …Last Friday I spoke with a 2nd surgeon in Redwood City, CA who said “we repair 95% of these things” My echo & TEE would not run on his computer program so he could not see the actual tests. He was sure all we’d have to do is “take up the slack”. I’ve made an appointment for 10-24 to go there for another echo & as he put it “to chat”. An mere 8 hour drive round trip .. to “chat”! SO, I go from one extreme to the other!! Today my husband got a call from Dr. Adams in NY at the mitral valve repair center. He COULD see the TEE & echo & he said it is 100% repairable … BUT only 3 surgeons in the U.S. would be able to accomplish that. It is ALL he does & he lectures around the country teaching other surgeons. Holy cow!! I live in CA & he is in NY! I have what is called Barlow’s Disease (thickened leaflets, calcifications) & a long time history of MVP I just learned I have this Barlow’s Disease today.. He wants my case for his video library file as it is a textbook case …he wants to see me on a plane. Not any emergency, but to start planning. He too wants to see what the surgeon in Redwood City has to say. He made it CLEAR that it is really a difficult repair to do … but it can be done & it is his specialty. SO, I feel for everyone trying to do the “right” thing. Who would know the internet could make such a huge difference in how our treatments & choices can be dealt with!! And Adam’s book … what a help!
As a side note … the Mitral Valve Repair Center at Mt. Sinai Hospital has a website. There is a wealth of information on that site. Cindy

 


Gail says on October 8th, 2008 at 2:33 pm

My husband had been followed for years by his doctor in NYC. He wanted the mitral repair and aortic valve replacement done 3 years ago. We got a second opinion at Cleveland Clinic and they said it could wait. He was flying there every 4 months for evaluation. In May they decided it should be done last month. During the pre-op testing he saw a different cardiologist who said the tests hadn’t changed at all. My husband then decided maybe it should be put off longer (I started to feel queasy at that point, to start again in a few months was more than I could handle). This started a huge “debate” between my husband the the doctor. I should mention my husband is a thoracic surgeon and a trained cardiac surgeon (he doesn’t do cardiac now, just thoracic)so you can imagine the discussion. The decision to go ahead was based on many factors but it was the MRI done that day that was the deciding factor.

 


Gideon Sims (Mitral Valve Repair Center) says on October 9th, 2008 at 3:15 pm

Cindy,

Thanks for the kind words about Dr. Adams and our Mitral Valve Repair Center, http://www.mitralvalverepair.org.

I think your post has a valuable lesson which should always be considered by anyone about to undergo surgery.

The fact that we were able to open your echo cd when another surgeon couldn’t is because of the team of people who work with Dr. Adams to make sure that our patients’ needs are taken care of.

The lesson is that when you have surgery, you are not just treated by one person, the surgeon, but by the dozens of people you will encounter during your treatment and stay in a hospital. When people are talking to a surgeon, they should be sure that as Adam says, they are confident in their surgeon, but also in the people they meet along the way. From the office staff who will be helping to arrange your surgery and your stay in the hospital to the nurses who will help look after you while you recover.

That’s why on our website, we’ve started putting up video interviews with some of the people on our surgical team. It’s important for people to realize that when they have surgery, they are not only in the care of their surgeon, but the anesthesiologists, nurses, pa’s, surgical technicians, and lots of other people who take care of them.

Gideon

 


Winona Blake says on October 9th, 2008 at 11:33 pm

I was told in June that my lifelong Mitral Valve Prolapse had degenerated to severe regurgitation, and that I was a candidate for repair, and that waiting too long had the likelihood of it going beyond being repairable, and would then need replacement. My valve was a Barlow’s disease valve. I live near Boston and had 2 opinions there, as well as sending my info to Cleveland Clinic for review. I had my repair done at CC on Sept 17th, three weeks ago, by Dr. Mihaljevic, robot assisted. My hospital experience is evidence of why they are rated #1 in heart treatment 14 years in a row – it is a team approach and everyone there was excellent. They also have a very informative website http://www.clevelandclinic.org.
Keep getting opinions until you are satisfied that you are getting responses that make sense to you, that you feel heard and responded to.
Winona

 


Queenee says on July 9th, 2012 at 11:21 pm

Hi Adam,
I just wanted to thank you for your amazing book on what to expect from valve surgery. We read the book several times and took it to the hospital on surgery day. You had mentioned Dr. Paul Stelzer at Mount Sinai in the book. He is one of the most caring and skilled surgeons we have ever met and a wonderful human being. He performed aortic valve replacement on my mother in May 2010. She had a speedy recovery and is more energetic today than ever before. We thank God everyday for giving us a chance to connect with you and Dr. Stelzer and to give me and my family the confidence that all will be ok. I pray that all those seeking valve surgery have the same outcome and remain positive in the whole process, everything will turn out just fine.
God bless!

 

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