Sunday, October 7, 2012

Getting a Second Opinion


Getting a second opinion for my son's mitral valve issues was the #1 best decision we ever made, hands down.  


Our local cardiologist told us to wait and replace his mitral valve in a few years. In his opinion, the current valve wasn't salvageable.  Because our goal was to replace the valve, we were letting LO's heart enlarge until it reached the size of an adult so the valve we implanted would be larger.  


I REALLY wanted to save the valve, so I went against the cardiologist's advice and sought a second opinion from the congenital valve program at Boston Children's.  They thought his leak was much worse than expected, that the leak explained all the weight gain issues we were experiencing as well as why he was sick so often.  They advocated for mitral valve repair to occur before this year's cold/flu season.  Our cardiologist advocated heavily against that course, in his experience, mitral valve repairs rarely worked.  He said the decision was ultimately up to us, but he felt that we were subjecting our son to a surgery that wasn't likely to succeed and we'd be replacing the valve in a few years regardless.  We sought a third opinion at CHOP.  CHOP agreed with Boston and, after reviewing the echo we sent, gently pointed out a number of issues with the original echo report that accompanied the actual echo.

We're now 9 days post op from my son's valvoplasty.  The severe mitral valve regurgitation is now trace mitral valve regurgitation and neither the surgeon nor the cardiologist expect that we'll ever need surgery again. 


The process of getting a second opinion at the institutions I worked with was very straight forward. We found it easiest to get a copy of the test results and reports from the source office ourselves and then send copies to the relevant parties instead of asking the doctor office to do it for us.  It required less paper work and we were able to move faster.

Calling the doctor from whom you want the second opinion is always the best course of action.  Once you've talked to someone at that office and have a point of contact, things tend to move much faster.  Without that direct connection your e-mail or letter can be lost or forgotten in the shuffle of a busy practice.  Having a single point of contact whom you can call if you need to is a huge benefit.

Once I spoke with the surgeon's personal assistant she gave me details as to what information they needed and where I could send it. Because I am impatient and didn't want to go through the process of mailing the paperwork I scanned all physical copies and created a PDF.  I then zipped that PDF along with the electronic copies of my son's echocardiograms and posted it to an FTP server.  

We found the second opinion process easy with both Boston Children's and CHOP.  The surgeon from Boston (Dr. Baird) called me personally within 3 days of receiving our records.  CHOP had a detailed and informative letter written within a week.  In both instances there was open communication and a great willingness to help and make getting information as easy as possible.

The idea of getting a second opinion can be intimidating for a number of reasons. The most common are:

1.  Fear that your local doctor will be angry or offended 
2.  Fear of the unknown and a lack of knowledge of the process

If your local doctor gets angry or offended, they probably aren't the doctor you need in your corner.  Medicine is an art, not a science.  Any doctor that doesn't accept and value input from other professionals in their field is a dangerous and  ignorant practitioner   I know that sounds strong, but in a field where personal experience weighs heavily into an individuals ability to treat, discounting the knowledge and experience of other practitioners is an irresponsible and egotistical mistake.  Any true professional will welcome alternate opinions and will honor your attempts to be as informed as possible before making life altering decisions.

I was pretty intimidated by the idea of getting a second opinion, but once I spoke with someone at the surgeon's office everything became really simple.  Most offices will have processes in place and can easily give you instructions and let you know what to expect when seeking a second opinion.  All you need to do is figure out the number to call.  After that things get pretty easy.


Here are some other discussions and blog posts on second opinions that you may find helpful:

http://community.babycenter.com/post/a32722619/getting_a_second_opinion

http://thatpoweroflove.blogspot.com/2011/11/all-about-second-opinions.html#axzz25vk1KeTv

To contact Boston for a second opinion, call 617-355-7932 or fill out this form http://www.childrenshospital.org/centers-and-services/departments-and-divisions/department-of-cardiac-surgery/request-a-second-opinion

To contact CHOP for a second opinion, contact the Referral Nurse Liaison at 267-426-9600
or e-mail chopcardiacreferral@email.chop.edu

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