This Is MS Multiple Sclerosis Community: Knowledge & Support

How doctors think (or don’t think) about CCSVI
September 01, 2010 08:46 by Dr. Lorne Brandes
Because of the great interest in CCSVI, many of my CTV blog posts on the subject have ended up on Facebook and MS internet chat sites. As a result, in addition to the many comments posted by readers on the CTV MedNews Express blog, I also receive innumerable personal e-mails. Invariably, they are from MS patients or their families who share their stories, both good and bad.

Sadly, one common thread is the often negative and/or hostile response they must endure from neurologists and other professional caregivers when the topic of CCSVI diagnosis or treatment is raised. Let me quote one example from an e-mail I received just this week. I have deleted names and places to protect the writer’s privacy. Words in parentheses are mine.

“It's been two months today since ___ and I flew to ___ for her treatment. When she flew down, she was completely paralyzed including her neck, and could barely speak in a raspy whisper, was on a morphine pump and in constant pain.

“Immediately after the [venoplasty], she could speak much better, and her right hand came back a wee bit as did movement in her feet. Since that time, ___ has lost the following: tinnitus [ringing in the ears], morphine pump, cognitive fog, MS Hug. She has gained the use of her head and neck, right arm movement has improved, left arm movement has improved, eyesight has cleared and improved, swallowing much better, some movement in her knees, legs and feet.

“Last week she signed her name for the first time in years.

“___ has her old spark back yet the hospital claims these are not gains. When I remind them that she was on her deathbed they shrug. The nursing staff are great but the doctors and nurse practitioner tend to be dismissive, arguing that she has "plateaued", in spite of continued improvement. It's an almost institutional attitude from them….”

After reading the e-mail, I was struck not so much by the description of the substantial and encouraging improvement, but by the negative reaction of the neurologists and nurse-practitioner. They seemed unwilling to believe what their eyes and ears were telling them. Why?

As another example, a patient told me that when he first went back to his neurologist at the MS clinic, clearly improved after the successful opening of his jugular stenosis, the doctor told him that he had been treated by a charlatan and then, without examination, curtly dismissed him with, “Come back in a year.”

Did the neurologist suggest repeating the MRI to see what might have changed in the interval? No, according to the man. Did he show any interest in re-testing his bladder function, which had apparently returned to normal 2 months after the procedure? No.

Even if the doctor was completely skeptical, where was his intellectual curiosity? Hiding, apparently!

Behavioral experts believe that negative responses such as this often result from a close-minded attitude regarding anything new, or out of the ordinary, a reaction increasingly evident among today’s physicians.

How has this culture developed?

While there is unlikely to be a single answer to that question, studies suggest that many healthcare-providers, male physicians foremost among them, have a need to control. If a patient does something of which they disapprove (like having an unordered venoplasty procedure), they often react by becoming angry or dismissive. It’s the “my way or the highway” mentality.

Negative physician behavior also may be a consequence of the increasing reliance on “evidence-based medicine”. While the evidentiary approach to decision-making and patient care is theoretically ideal, treating many diseases in the real world is far less so, simply because so much remains unknown about so many conditions. A foremost example is multiple sclerosis.

As a result, when dealing with an “outside the box” scenario, for which there is no current medical algorithm (e.g. MS as a vascular disease), and despite being confronted by patients who show apparent clinical improvement following venoplasty, many neurologists appear unable, or unwilling, to accept what they see, or to think in new terms about the condition. In effect, from an intellectual perspective, they have lost control.

In his widely-acclaimed book, “How Doctor’s Think”, Harvard University’s Dr. Jerome Groopman bemoans doctors “who relinquish their own thinking and instead look to classification schemes and algorithms to think for them”. Dr. Groopman’s colleague, oncologist Dr. Stephen Nimer, agrees “It’s a static way of looking at people. Strictly speaking, it’s correct. But clinically speaking, it’s wrong,” he comments.

Groopman continues: “Clinical algorithms can be useful for run-of-the-mill diagnosis and treatment… but they quickly fall apart when a doctor needs to think outside the box…In such cases – the kinds of cases where we most need a discerning doctor – algorithms discourage physicians from thinking independently and creatively. Instead of expanding a doctor’s thinking, they can constrain it.”

I totally agree with Drs. Groopman and Nimer, and believe that this, along with the “control” issue, forms the crux of the problem facing MS patients when they discuss CCSVI with their neurologists, or see them for assessment after being treated “outside the system”.

The big question is how to change physicians’ attitudes, and the ingrained scientific and medical thinking that fails to respond appropriately to new information, or out-of-the box situations.

While there are no easy answers, I can certainly suggest one solution. Starting today, Jerome Groopman’s “How Doctor’s Think” should be, to rephrase the statement made by Time magazine, “must reading for every neurologist who cares for MS patients and every MS patient who wishes to discuss CCSVI with their neurologist.”

9/1/2010 11:10:26 AM #


@Paul, you can't possibly have any idea how patronizing you are to MS patients. How dare you accuse people of exaggerating symptoms? Here's a clue - regaining feeling in your hands and the ability to move parts of your body which were previously completely numb and/or paralyzed is NOT a placebo effect. How dare you and those in your corner accuse people with MS of not getting better before their procedure just because they didn't want to bad enough before?! Are you kidding? Make no mistake, that is exactly what you are doing when you insinuate that they are not truthful in describing their symptoms, their improvements, and say that it's all placebo.

Are you aware that the current CRAB drugs are only around 30% effective and that a major independent study in Britain has shown they are actually more harmful than beneficial? And that scant 30% slowing of progression is worth over $6 billion per year and projected to grow (actually described as a "bright investment opportunity)? Another FYI - 48% of the monies raised by the MS Society in Canada go to administration (salaries and such) and fund raising in perpetuity. Just so you know.

Neurologists have been screwing around with MS for over 60 years now with their autoimmune model and have come nowhere near a cure, or even a way to slow the progression with better than 30% odds. I say we wrest "ownership" of MS from them and let the vascular specialists give it a go for a while. Seems as though they've come much farther in just a few years than the neuros and the NMSS have in a lifetime now.

Kat

Here's the link, cakes. Thanks for posting--this is another terrific essay from Dr. Brandes.

-edit...link won't work due to internal parenthesis in title....can't use code. nevermind...

cheer

thank you for trying.. and yes, good essay good doctor.

congrats to the U.S.A. on the NIH - Dr. Mehta announcement !!

Canada

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