Doctors & patients are saying about 'A-Fib.com'...
"A-Fib.com is a great web site for patients, that is unequaled by anything else out there."
Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN
"Jill and I put you and your work in our prayers every night. What you do to help people through this [A-Fib] process is really incredible."
Jill and Steve Douglas, East Troy, WI
“I really appreciate all the information on your website as it allows me to be a better informed patient and to know what questions to ask my EP.
Faye Spencer, Boise, ID, April 2017
“I think your site has helped a lot of patients.”Dr. Hugh G. Calkins, MD Johns Hopkins,
Baltimore, MD
Patient Advice: The First Doctor You See isn’t Necessarily the Right One for You
Advice from Patients Now Free from the Burden of Atrial Fibrillation
Susan Klein, comes from a long line of people with cardiac rhythm disorders. She recalls finally being properly diagnosed:
Susan K.
“I began reading everything I could about the condition but mainly how to make it stop.
Along the way I can’t recall how many times I was told to take the medicine and stop looking for trouble.
I’m so glad I didn’t listen to the naysayers, because today I’m A-Fib free and loving it.”
Warren Welsh, Melbourne, Australia, talks about the years he needlessly endured A-Fib, in part, based on one doctor’s advice:
Warren W.
“I would urge any A-Fib sufferers not to make the same mistakes I did by not researching their treatment options.
…I experienced several years of unnecessary suffering by accepting an opinion of one specialist who said I would have to live in A-Fib.
Sheri Weber, from Boyce, VA, shared this advice about finding the right doctor for your treatment goals:
Sheri W.
“I wish I had realized that the first doctor you see is not necessarily the right one for you. I fooled around way too long, believing what my cardio doctor said. I should have been thinking outside the box.
Run―don’t walk―to the best specialist you can find in your area.”
How to Find the Best Doctor for You
To be cured of your A-Fib, you may need to ‘fire’ your current doctor.
Seek a heart rhythm specialist, a cardiac electrophysiologist (EP), who will partner with you to create a treatment plan—a path to finding your cure or best outcome.
To make this happen, see my page, Finding the Right Doctor for You and Your A-Fib.
The First Doctor You See is Not Necessarily the Right One for You.
From The Top 10 List of A-Fib Patients’ Best Advice’ , a consensus of valuable advice from fellow Atrial Fibrillation patients; Chapter 12, Beat Your A-Fib: The Essential Guide to Finding Your Cure by Steve S. Ryan, PhD.
Go to Top 10 List of A-Fib Patients’ Best Advice
♥ Please, share the advice ♥
Daniel Shares About A-Fib: “I Have Gotten a Lot of Bad Advice From Various GPs”
Advice from a patient now free from the burden of Atrial Fibrillation: Educate yourself on all treatment options before making decisions.
Daniel Doane, Sonora, California, talks about all the false info he got from doctors.
“Don’t believe your GP. I have gotten a lot of bad advice from various GPs.
Daniel D.
• ‘Just take a little digoxin and you will be fine.’
• ‘You are probably missing some micro-nutrient. If you buy this product I sell, it may well provide that and stop your A-Fib.’
• ‘I think that all of these tests your EP is requesting are just a waste of money.’
• (From a cardiologist) ‘Don’t worry about a little A-Fib. It won’t kill you.’ ““If you have Atrial Fibrillation, see an electrophysiologist. If you aren’t comfortable with what they are saying, see another one.”
Daniel did his research and is now A-Fib-free after a Totally Thoracoscopic (TT) Mini-Maze operation.
If you want to read more of Daniel Doane’s story, you’ll find it on pp. 152-162 in Beat Your A-Fib: The Essential Guide to Finding Your Cure by Steve S. Ryan, PhD. Learn more about my book.
Don’t Believe Everything You’re Told About A-Fib
In Daniel’s story you read how important it was for him to educate himself. You, too, can learn about all your treatment options. Check our Treatments section covering diagnostic tests, common mineral deficiencies, drug therapies, cardioversion, catheter ablations, surgery and more.
Next, read answers at FAQ: About A-Fib Treatments Options including natural therapies and holistic treatments.
In addition, you may want to browse our A-Fib Video Library and check our list of Online Discussion Groups.
Finally, ask yourself, ‘What are my treatment goals?”, then read our Q&A section: Decision About Treatment Options.
Remember: Always Aim for a Cure.
A Tale of Two Ablations and Why All EPs Are Not Equal
I just received an email and O.R. (Operating Room) reports from Louis who in 2014 had a successful catheter ablation by Dr. David Wilber at Loyola in Chicago. Dr. Wilber is nationally known for both his ablation skills and experience, as well as for his research.
First Ablation with Dr. David Wilber
Dr. Wilbur’s ablation of Louis was textbook. Louis’ A-Fib terminated during his ablation procedure, which is considered the ideal outcome.
But Dr. Wilber didn’t stop there.
He used isoproterenol (IV medication) to try to induce non-PV triggers and found A-Fib signals coming from the Superior Vena Cava (SVC). He isolated the SVC and could no longer induce any arrhythmias in Louis. (Some EPs would not work that hard, and would have trouble finding and ablating non-PV triggers.)
Relocation, Then Second Ablation―Failure!
But later Louis did develop A-Fib/Flutter again. He had relocated to a distant state so he selected a second EP and had a second ablation there. This ablation was a failure.
After touching up the right pulmonary veins (PVs), the second EP used adenosine and pacing to try to induce arrhythmia signals. He induced Flutter and isolated the right atrium by making a cavo-tricuspid isthmus line. He documented bidirectional block in the right atrium, but Louis still had Flutter.
Rather than map and track down the source of the Flutter, the EP simply Electrocardioverted Louis and stopped the ablation at that point. Then he put Louis on the dreaded antiarrhythmic drug amiodarone.
Still in Flutter―Amiodarone Side Effects
But after the second ablation, Louis still had A-Fib/Flutter.
On amiodarone, Louis developed the symptoms of loss of weight, thinning hair, extreme dry mouth, increased hand tremors, etc. Louis was taken off of amiodarone and is doing better. But he is still bothered by Flutter. See Amiodarone Effective but Toxic.
I’m working with Louis to get him to a “master” EP, a highly skilled EP with a high success rate with difficult A-Fib cases.
What Went Wrong with Louis’ Second Ablation?
From what can be deduced from Louis’ O.R. (Operating Room) report, there seems to be no mention of checking for entrance and exit block after ablating Louis’ pulmonary veins.
The second EP did use adenosine and pacing and induced a Flutter circuit. He ablated the right atrium and made a cavo-tricuspid isthmus line to make sure no Flutter came from the right atrium. But Louis still had Flutter.
Instead of using any of today’s advanced mapping and isolation strategies, Louis’ EP simply Electrocardioverted him to restore him to sinus. Then he stopped the ablation.
As a “crutch”, he put Louis on amiodarone, the most effective but also the most toxic of the antiarrhythmic drugs.
All EPs are Not Equal―It May Take Work to Find the Right EP
I’m sorry to say, the second EP Louis went to is indeed listed in our directory of EPs. He has all the proper credentials and is a member of the Heart Rhythm Society. But all EPs are obviously not equal. (See my editorial, Huge Growth in Number of EPs Doing Catheter Ablations, But All EPs Are Not Equal.)
Don’t just go to the EP whose office is near you. Go to the best, most experienced EP you can reasonably find. I know it’s a lot of effort. But you have to work at finding the right EP for you.
Do your due diligence. Seek recommendations from your General Practitioner (GP) and from other A-Fib patients (see our Resources/Bulletin Boards for a list of online discussion groups).
If you know nurses or support staff who work in the cardiology field or in Electrophysiology (EP) labs, they can be great resources.
Don’t rely on a single online source when researching and selecting doctors. Be cautious of all doctor informational listings you find on web sites (yes, including this one).
Be prepared to travel if that’s what it takes.
Learn How to Select Your EP
On our page Finding the Right Doctor for You and your A-Fib, we take you step-by-step to finding the right EP for you and your treatment goals.
Aim to Stop Your A-Fib Episodes Not Just Control Them
You don’t have to live with Atrial Fibrillation. You don’t have to settle for a lifetime of “controlling” your Atrial Fibrillation. Don’t accept being on drugs for the rest of your life. Instead, aim for an A-Fib cure.
The Heart Rhythm Specialist
Everyone with A-Fib should see a heart rhythm specialist, an cardiac Electrophysiologist (EP). An EP is a cardiologist who specializes in the electrical activity of the heart and in the diagnosis and treatment of heart rhythm disorders.
You want to carefully select a doctor who will partner with you to create a treatment plan—a path to finding your cure or the best outcome for you.
Finding the Right Doctor
To find the right doctor for you, start by reading our page: Finding the Right Doctor for You and Your A-Fib. We offer you what you need to know and how to do it.
To help you in your search, we’ve also prepared a list of Questions You’ve Got to Ask for each prospective doctor. The list is designed to solicit information to help you select the best doctor for you and your type of A-Fib.
In addition, we help you interpret a doctor’s possible answers. After each question, we’ve included typical doctor responses and an analysis of what those responses may mean to you.
Questions to Ask Doctors Worksheet
We’ve prepared a print version of this list of questions with our handy Questions to Ask Doctors Worksheet. Print and use for each doctor interview to collect the doctor’s answers. There’s space for your own questions, too. (Read more about our worksheet.)
Download our free PDF worksheet (separate browser window will open). You can send it directly to your printer or download and save to your computer to print copies any time.
A-Fib.com’s Directory of Doctors Treating A-Fib: Medical Centers and Practices
Not all EPs treat A-Fib patients. To help you find EPs who do, we offer you our own Directory of physicians and medical centers treating Atrial Fibrillation patients. This evolving list is offered as a service and convenience to A-Fib patients. The Directory is divided into three categories.
No Pay-to-Play Listings Here!
Note: Unlike other physician directories, A-Fib.com offers no preferential listings to be included in our Directory of Doctors and Medical Centers. A-Fib.com is not affiliated with any practice, medical center or physician. We accept no fee, benefit or value of any kind for listing a specific doctor or medical center. See our article: Don’t be Fooled by Pay-to-Play Online Doctor Referral Sites.
Leaving the Patient in A-Fib—No! No! No!
The goal of today’s A-Fib treatment guidelines is to get A-Fib patients back into normal sinus rhythm (NSR). Don’t let your doctor leave you in A-Fib. Unless too feeble, there’s no good reason to just leave someone in A-Fib. (Read more.)
Start with finding the right doctor for you. Then, learn your treatment options. And always Aim for a Cure!
Looking for the Best Doctor, Online Ratings are Unlikely to be Much Help
According to the Journal of the American Medical Association, nearly 60 percent of patients say they like to use online reviews when searching for a physician.
As healthcare consumers, you need to know about the limitations of each of these kinds of sites.
“Consumers should be careful about giving them too much credence, whether they are comments or starred assessments”, says Dr. Mark W. Friedberg, director of the Boston office of the RAND Corporation and one of the co-authors of a study that analyzed ProPublica’s surgeon website. ProPublica is one of a wide range of doctor rating sites available to consumers online.
Some websites, like ProPublica, post objective medical performance measures. Other websites like Healthgrades, Vitals, and Yelp post star ratings and comments written by patients.
Keep in mind that there’s no way of knowing who’s posting many online doctor reviews or what motivated the reviewer to write about the physician.
Dr. Friedberg warns, “You never know who’s writing these. It could be the doctor, or his friends and family members. It could be a patient who had an unusually good or bad experience…it could be Russian bots. It’s the Wild West. Buyer beware.”
Research Results: Online Physician Ratings Unlikely to be Much Help
Looking for the best doctor, online ratings are unlikely to be much help according to researchers at Cedars-Sinai Medical Center in Los Angeles. They compared reviews of 78 of the medical center’s specialists on five popular ratings sites with a set of internal quality measures and found there was essentially no correlation.
The study, published in the Journal of the American Medical Informatics Association, compared measures developed by Cedars-Sinai with users’ ratings on five sites: Healthgrades, Yelp, Vitals, RateMDs and UCompareHealthCare. Cedars-Sinai’s internal performance metrics include reviews from doctors’ colleagues and administrators, how often patients are readmitted, how long they remain in the hospital, and adherence to practice guidelines.
According to the study, there was little correlation between the doctors’ performance scores and how their patients assessed them on the websites.
‘Pay-to-Play’ Doctor Listings Common
Furthermore, paying to be listed in a doctor referral service is common among online directories. In addition, doctors can pay extra to be listed first in your database search results.
Doctors can pay to be in your search results
The article ‘ABC News Investigates Top Doctor Awards: Are They Always Well Deserved?’ includes a warning:
“Don’t be confused by sound-alike websites like ‘TopDocs.com’. ‘TopDocs.com’ does not claim to rank doctors in any way. In fact, regardless of true top doctor status, a spot at TopDocs.com is available to any physician who pays for membership. The cost to buy a spot on the TopDocs.com website ranges anywhere from $1,500 to $10,000, in addition to an annual fee of $1,600.”
Don’t fall prey to hype, advertising, or third parties that have something to gain by recommending a particular healthcare provider.
Are Consumer Ratings of Doctors Any Better?
Some people believe that patient ratings are the best source of information on doctors. Unfortunately, that is a misguided assumption. Patients may be able to rate a doctor’s “bedside manner,” but they know little about the complexity of medical care.
In fact, an article in Forbes magazine stated:
“The current system might just kill you. Many doctors, in order to get high ratings (and a higher salary), over-prescribe and over-test, just to “satisfy” patients who probably aren‘t qualified to judge their care. And there’s a financial cost, as flawed patient survey methods and the decisions they induce, produce billions more in waste.”
What Patients Need to Know
Some web sites for A-Fib patients may be biased, often for financial gain. When searching online for any health-related information, always ask yourself:
“Who is paying for this website, and what is their agenda?”
When searching for any doctor, especially a cardiologist or electrophysiologist, do not rely entirely on doctor ratings or doctor referral sites in isolation.
Instead, get personal referrals. If you know nurses or staff who work in the cardiology field, they can be great resources. Ask for referrals from other A-Fib patients.
Refer to our A-Fib.com Directory of Doctors and Medical Centers who treat A-Fib patients. Then do your own research on each doctor. For guidance, see our page: Finding the Right Doctor for You.
At A-Fib.com, we accept no fee, benefit or value of any kind to be listed in our Directory of Doctors and Medical Centers. A-Fib.com is not affiliated with any practice, medical center or physician.
A word to the wise…
At Medical Centers: Why to Always Ask for a Specific EP
In talking with A-Fib patients, I’ve found a disturbing trend when they seek an Electrophysiologist (EP) at a medical center when they don’t have the name of a specific doctor.
Often the medical center’s office will assign the newest and/or least experienced EP on staff.
Not good. Instead, you want an experienced EP with a high success rate at getting A-Fib patients back into normal rhythm. (You deserve nothing less.)
Your Search for the Right EP
First, seek recommendations from your General Practitioner (GP) or cardiologist. If you know nurses or staff who work in the cardiology field, they can be great resources. Ask for referrals from other A-Fib patients.
Begin your own research with our page, Find the Right Doctor for You. Then check our Directory of Doctors Treating A-Fib.
All EPs Are Not Equal
After you’ve done your research, you’ll have a list of EPs you know are more experienced in getting A-Fib patients back into normal sinus rhythm. (For example, someone with the initials FHRS after his name, and/or a ‘Castle Connolly Top Doctor’).
Then, you can contact a medical center and ask for a particular EP.
Especially when you are seeking an ablation, all EPs are not equal. Selecting the right EP isn’t like getting a haircut at SuperCuts where any stylist will do.
She Calls it a Miracle: No More Meds and Restored Quality of Life
“Do not take ‘this is as good as it gets’ as an answer. Do your own research about what’s possible and take a co-leadership role with your doctor.”
Michele Straube, A-Fib free after 30 years
‘I Want to Cure My A-Fib, Not Just Manage It.’
Keep in Mind: For many A-Fib patients, their best outcome came about only when they told their doctor, ‘I want to cure my A-Fib, not just manage it.’ (And, if needed, they also changed doctors.)
How to Find the Best Doctor for Youor
To be cured of your A-Fib, you may need to ‘fire’ your current doctor. Seek an electrophysiologist (EP), a cardiologist who specializes in heart rhythm problems (the electrical functions of the heart).
Choose a doctor who will partner with you to create a treatment plan—a path to finding your cure or best outcome. To learn how, read Finding the Right Doctor for You and Your A-Fib.
Michele’s Personal A-Fib Story: To learn the importance of finding the right doctor, read Michele Straube’s personal A-Fib experience: Cured after 30 years in A-Fib.
Run―don’t walk―to the best EP you can afford.
Prepare for Your Doctor Visits: Two FREE Appointment Worksheets
After your initial Atrial Fibrillation diagnosis, use these free appointment worksheets to help you prepare when visiting a cardiologist for the first time and to record your doctor’s answers.
AHA FREE Worksheet: Partnering in Your Treatment
Review the worksheet “A-Fib: Partnering in Your Treatment” on the American Heart Association website. These are the most common questions A-Fib patients ask a doctor after first being diagnosed with Atrial Fibrillation. Take with you to your appointment and make notes in the spaces provided.
Download the PDF worksheet: “A-Fib: Partnering in Your Treatment”. Once the PDF download is complete, SAVE to your hard drive. Click and open it. You can then print, or make copies later when needed.
A-Fib.com’s FREE Worksheet: 10 Questions to Ask Your New Doctor
Looking for a new cardiologist or electrophysiologist? Here’s a worksheet with a list of ten interview questions to ask each doctor and an area to note their responses. Download and print a copy of this worksheet for each doctor you talk to (separate browser window will open).
AFTER your interviews: learn what their answers indicate. Go to the our page, Choosing the Right Doctor: Questions You’ve Got to Ask (And What the Answers Mean), and compare each doctor’s answers to the list of interpretation of answers.
Which Doctor is Right For You?
Don’t rely on a single online source when researching and selecting doctors. Be cautious of all doctor informational listings you find on web sites (yes, including this one).
To help you find and choose the right doctor, see our page: Finding the Right Doctor for You and Your Treatment Goals.
Choosing Your Doctor: Good Rapport & Trust are Vital for Your Health
An A-Fib.com reader, now A-Fib-free after two ablations, wrote me about an experience with one EP she had consulted:
“I checked your website’s listing of EPs and was surprised to find (name withheld) listed under (affiliation withheld).
This is the EP who told me I was definitely not a candidate for ablation and I needed to just accept the fact that I needed to stay on basic medications (atenolol and Eliquis).
This guy is a smooth talker and tells you how he “treats his patients just like they were his family members”.
However, when I pressed him with questions, he told me that ‘he was the one who went to medical school’. I would never recommend this EP to anyone.”
Studies of Doctor-Patient Relationships
At A-Fib.com, we stress the importance of a good doctor-patient relationship and finding the right doctor for you and your treatment goals. Don’t just go to a doctor because their office is nearby.
Indeed, recent research proves that patients do better when they have a good rapport with their doctor. Researchers at Massachusetts General Hospital analyzed the results of 13 high-quality studies of doctor-patient relationships.
“Patients who trust their doctors are more likely to follow their advice, ask questions and discuss how treatments are working”, according to Dr. Gerald B. Hickson of Vanderbilt University School of Medicine.
Doctors, in turn, may be more engaged.
Finding the Right Doctor for You
Which doctor?
If the first doctor you interview doesn’t meet your needs, move on the second (or third) doctor on your list, etc. Yes, I know it takes time and energy, but a good doctor-patient relationship is important. You’ll do better when you have a positive rapport with your doctor.
Read more at How to Find the Right Doctor for You and Your Treatment Goals.
Research Supports It: ‘If You Don’t Like Your Doctor, Look For a New One!’
If you like, trust and respect your doctor(s), you’re more likely to accept and follow their advice. It’s intuitive, isn’t it? But now a review of studies backs it up. Developing a good relationship helps you feel comfortable asking questions and getting feedback in a give-and-take environment.
Relationship-Based Strategies Improve Patients’ Health
The more people like their doctors, the healthier they tend to be. This is what researchers at Massachusetts General Hospital found in a review study where they examined 13 research reports on this subject.
A mega-study review looked at doctors who were trained in “relationship-based strategies” such as making eye contact, listening well, and helping patients set goals.
The results: these strategies significantly improved their patients’ health compared to control groups. Their patients achieved lower blood pressure, increased their weight loss, reduced pain and improved glucose management.
If You Don’t Like Your Doctor, Look For a New One!
If you don’t have a good rapport with your current doctors―even if they are “the best” in their field―it’s worth looking elsewhere for a new doctor.
In the article, Know When it’s Time to Fire your Doctor, CNN.com Senior Medical Correspondent Elizabeth Cohen discusses five ways to know when it’s time to think about leaving your doctor, and the best way to do it. The highlights are:
1. When your doctor doesn’t like it when you ask questions
2. When your doctor doesn’t listen to you
3. If your doctor can’t explain your illness to you in terms you understand
4. If you feel bad when you leave your doctor’s office
5. If you feel your doctor just doesn’t like you — or if you don’t like him or her
Being the “Best in the Field” Isn’t Enough
Even if a doctor(s) is the best in their field and an expert in your condition, that may not help you if you don’t communicate well with them and don’t relate to them. If we don’t like our doctors, we’re less likely to listen to them.
Don’t Be Afraid to Fire Your Doctor
Doctor shopping?
Changing doctors can be scary. According to Robin DiMatteo, a researcher at the University of California at Riverside who’s studied doctor-patient communication. “”I really think it’s a fear of the unknown. But if the doctor isn’t supporting your healing or health, you should go.”
Finding a new doctor: To learn how, read our page: How to find the right doctor for you and your treatment goals.
