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Definition of Mitral Valve Prolapse and Over-Diagnosis
The Puzzle of Fibromyalgia - an expert commentary
Pain In The Brain
Definition of Mitral Valve Prolapse and Over-Diagnosis
What is MVP?
The cardiac valves keep the blood moving in the right direction through the heart. The mitral valve regulates the opening between two of the heart's four chambers between the left atrium and the left ventricle. As the powerful left ventricle contracts (ejecting oxygen-rich blood throughout the body), the mitral valve closes, thereby preventing a backwash of
blood ("regurgitation") into the left atrium. MVP occurs when abnormalities in the mitral valve allow it to flop (i.e., to prolapse) back into the left atrium as the left ventricle
contracts, thus allowing a certain amount of regurgitation. In general, the abnormality that allows prolapse to occur is a congenital excess of tissue on the valve, making it "floppy." The diagnosis of MVP is generally suspected when the doctor hears the classic "click-murmur" while listening to the heart (the click being caused by the prolapsing of the mitral valve; the murmur by the subsequent regurgitation of blood), and is confirmed with an echocardiogram (a test in which an image is generated by bouncing sound waves off the heart.)
MVP is
extremely common.
Roughly 2% to 4% of the general population will have MVP on echocardiographic screening (a much lower proportion, however, than previously thought). Further, there is often a genetic predisposition to MVP. If a person has true MVP, it is likely that about 30% of his/her close relatives will also have it.
Why is MVP significant?
Two clinical
problems are caused directly by MVP: significant mitral regurgitation, and mitral endocarditis
(i.e., infection of the mitral valve). A "leaky" mitral valve - whatever the cause - can have
serious consequences. If severe enough, mitral regurgitation can lead to enlargement of the
cardiac chambers, weakening of the heart muscle, and ultimately, to heart failure. Fortunately, MVP tends NOT to cause significant mitral regurgitation. Only about 5% of patients with true MVP will develop significant mitral regurgitation over their lifetimes, to the point that mitral valve surgery may be required. The vast majority of those with MVP lead completely normal and active lives. The risk of developing a cardiac infection - endocarditis - increases any time a leaky valve is present within the heart. Endocarditis associated with MVP is rare, but when it does occur it is such a devastating condition that patients with true MVP need to take precautions. Prophylactic antibiotics should be prescribed for these individuals prior to any procedure likely to "seed" the bloodstream with bacteria. (The most common procedure that does this is a visit to the dentist.)
What is the prognosis with MVP?
The vast majority of patients with MVP can expect to lead completely normal lives, without any symptoms due to their MVP and without any decrease in longevity. Indeed, some studies suggest that patients with MVP may enjoy an increased lifespan as compared to the general population.
What other clinical problems have been attributed to MVP?
Because MVP is common, it has been associated with a myriad of conditions that probably do not have anything to do with the MVP itself. The process for forming such questionable associations works like this:
A) A patient goes to a doctor with symptoms that are unusual, puzzling, annoying, or otherwise difficult, and that threaten to be relatively time-consuming to pin down.
B) The doctor orders a bunch of tests, including an echocardiogram.
C) MVP is detected on the echocardiogram.
D) The unusual symptoms are attributed to MVP, whether or not the two are related.
Here are the more common conditions that have been associated with MVP, but whose actual
relationship to MVP is tenuous at best.
Anxiety, chest pain, palpitations.
While it is commonly
believed that MVP causes these symptoms, most individuals with MVP do not experience them, and most individuals with anxiety, chest pain and palpitations do not have MVP. If an individual has anxiety and MVP, the anxiety should be treated as a separate problem. If he/she has chest pain and/or palpitations along with MVP, those symptoms need to be evaluated as distinct problems, just as they would be in any other individual. Detecting MVP ought not give doctors a license to "write off" virtually all chest-related symptoms.
Stroke or sudden death.
These devastating conditions are rare in young, healthy individuals, so when they occur an exhaustive search is usually conducted looking for a cause. And in a certain proportion of these individuals, MVP is found. However, it has never
been shown that MVP itself causes either stroke or sudden death, or that the incidence of MVP is higher than normal in patients who experience these problems. Patients with severe mitral regurgitation ? from any cause ? have an increased risk of stroke and sudden death, but those with run-of-the-mill MVP probably have the same risk as the general population.
These poorly understood conditions all have to do with an imbalance, and often a peculiar volatility, in the autonomic nervous system. (The autonomic nervous system controls the "fight or flight" response to external stimuli, as well as the workings of the internal organs, such as heart rate, digestion, and breathing patterns). These dysautonomia syndromes are variably associated with frequent, vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety and both for doctors (who generally don't understand them) and patients (who have to live with them). In their desperation to make a diagnosis by ordering every test known to man, doctors have found (naturally) that a proportion of these difficult patients have MVP. Relieved to have something on which to blame this thorny symptom complex, doctors have coined the phrase
"Mitral Valve Prolapse Syndrome" (MVPS) to explain it. Again, however, these conditions are very often present without any sign of MVP (no matter how urgently one looks). Whether the MVP actually has anything whatever to do with these symptoms is very doubtful.
The over-diagnosis of MVP
For many years, MVP has been systematically over-diagnosed. The extreme sensitivity of the echocardiogram in detecting even a slight whiff of mitral regurgitation has become so great that regurgitation can be found in a substantial proportion of the population if one looks hard enough. This ability, coupled with many physicians' strong desire to find MVP in anybody presenting with atypical chest pain, palpitations, or symptoms of dysautonomia, has led to a systematic over-diagnosis of MVP. In some studies, up to 35% of the general population was found to have MVP!
In a landmark article in the New England Journal of Medicine in 1999, researchers documented that, when using strict diagnostic criteria, MVP is seen in only 2% of the population. This figure still means that millions of Americans have MVP, but underscores the gross over-diagnosis that has been seen habitually with this condition during the past decades.
This over-diagnosis is a problem for several reasons. Patients are labeled as having a "cardiac condition" when in fact they have none. Such a label has possible insurability implications. Patients are placed on prophylactic antibiotics inappropriately. But more importantly, difficult but treatable conditions (like the dysautonomia syndromes) are "written off" as being caused by MVP, and potentially effective therapies ignored.
General recommendations
If you have been told you have MVP, you ought to consider doing the following:
1) Make sure the diagnosis is correct. Ask your doctor if she made the diagnosis of MVP using the Freed criteria (the criteria used by the authors of the New England Journal study mentioned above, and referenced below). If she did not, or if she doesn't know what you're talking about, you should consider getting a second opinion.
2) If you do have true MVP, make sure you have been fully instructed about antibiotic prophylaxis for endocarditis.
3) If you do have true MVP, make sure you understand from your physician the degree of mitral regurgitation you have (i.e., minimal vs. moderate or severe), and that your doctor has outlined a schedule for following the degree of regurgitation over time.
4) If you have chest pain or palpitations, these symptoms ought to be evaluated as separate entities. If your doctor merely writes these symptoms off as being due to MVP, without ever performing an evaluation, remember the First Rule in being an effective patient: You hired him; you can fire him.
5) If you think you may have one of the dysautonomia syndromes, make sure your doctor is
well-versed in managing these conditions, works with you to develop a treatment plan, and is committed to working with you long-term to alleviate your symptoms.
Again, don't waste time with a doctor who seems too willing to write off your symptoms as "just one of those things"
that goes along with MVP.The dysautonomias are real, honest-to-goodness physiologic disorders. While their treatment is often difficult, they can be treated. And while they're enough to make anyone crazy, they are not to be dismissed as being caused by either MVP or craziness.
The Puzzle of Fybromyalgia - an expert commentary
A collection of painful symptoms rather than a disease, fibromyalgia strikes as many as 2 percent of Americans. Its chief symptom is pain; patients ache all over and may be sensitive to touch. The malady is widely discussed on the Internet, as people seek alternative therapies for a condition that baffles medical science. But in this interview, one of the nation's leading medical experts cautions sufferers to be wary of alternative therapies, since none of them, he says, has been proven effective in clinical trials.
Q: What is fibromyalgia?
A: It's a condition characterized by chronic pain. People ache all over and are tired all the time, almost as if they have a permanent bad case of the flu. Other symptoms that may occur - but aren't necessary for a diagnosis of fibromyalgia - are anxiety and depression. Fibromyalgia isn't thought of as a disease. It's more a syndrome - a collection of symptoms with no known actual cause.
Q: No cause?
A: Well, there are a lot of theories. The original thought was that the muscles were inflamed, but so far that's not been borne out. One study in the 1970s took a group of medical students and deprived them of sleep for 72 hours, and they developed symptoms that looked a lot like fibromyalgia. Other theories suggest hormonal abnormalities, but again, nothing has been clearly
proven. We're particularly interested in two theories here at Hopkins. One is that some people with
fibromyalgia syndrome (FMS) may have trouble keeping
their blood pressure high enough. I'm investigating a
second theory that people who are characterized as
"double-jointed" - people who are very, very flexible -
may have an increased incidence of fibromyalgia. There
may be a relationship between FMS and that increased
flexibility, at least for some patients.
Q: Does it strike only in the joints?
A: No. The pain can involve any of the body's fibroustissues - muscles, tendons, joints or ligaments.
Q: How do you know it's not arthritis or lupus?
A: It really looks quite different. In 1990, the American College of Rheumatology adopted criteria to help define FMS. The patient must have tender points. That's a specific point which is quite tender to mild pressure. The patient must have 11 out of 18 predefined tender points. The pain has to be widespread, meaning it must be on both sides of the body, above and below the waist.
Q: Is it cyclic, or are patients in pain all the time?
A: Most people say they're in pain all of the time, but
the intensity can change. The pain may be worse in wet
and damp weather, during times of emotional stress and
during or after strenuous exercise. For some patients,
the pain worsens during menstruation.
Q: So, it strikes mostly women?
A: Yes. We don't know why, but 90 percent of the cases are in women. And as many as 2 percent of the population suffer from FMS. It most often strikes in early- to mid-adulthood. While FMS usually seems to appear by itself, there are some cases where it follows a trigger event, such as an injury or an illness. Some people claim that chemical substances - like a ruptured breast implant - have triggered their FMS.
Q: Is it disabling?
A: It varies from patient to patient. Some people ache
but are able to go about their work. Others are practically incapacitated. That's one of the issues in the workplace: If you get FMS while on the job, are you disabled? Employers say, "Show me this on an MRI," and of course it can't be done. FMS can be disabling outside the workplace, too. The pain can affect family life, social activities, sexual function and other parts of daily life.
Q: Can it be cured?
A: It can be treated. The cornerstone of treatment isrehabilitation. Heavy resistive exercise, like weight lifting, is too painful for these people. But gentle
aerobic exercise, like low-level treadmill walking, biking or aquatics, keeps them moving and produces endorphins, the body's own painkillers. It also improves cardiovascular fitness. A stretching program can help those people who aren't abnormally flexible. We may add tender point injections, relaxation training or stress management counseling, depending on what each patient needs. If anxiety and depression are severe, psychological counseling can help. We use medications to try to restore a normal sleep pattern. The main ones used are the tricyclic antidepressants, which we use in low doses, lower than normally used for the treatment of depression. The tricyclics are the only drugs shown in clinical trials to help FMS. For pain relief, we often use the non-steroidal anti-inflammatory drugs, such as ibuprofen, but they may not be helpful. Clinical trials of those drugs haven't been very convincing. In my experience, narcotics don't work
particularly well in FMS. There's a huge amount of folk
literature - this is all over the Internet - with
things such as "FMS diets" and alternative drug
therapies. None has gone into clinical trials, and none
has yet really been proven to be helpful. Some of them
may be dangerous, in fact. Patients should really talk
to a physician before starting any of these treatments.
Q: Is this a new syndrome?
A: There were always people who ached all over and nobody knew what was going on. The first major paper on this was published in 1977, and interest has really picked up in the last 15 years or so. Our understanding of the chronic pain patient has improved a great deal in that time.
Q: Is fibromyalgia frequently misdiagnosed?
A: It's still considered a "threshold diagnosis." A lot of misunderstood pain gets characterized as FMS, and probably a lot of FMS goes undiagnosed. But make no mistake - FMS is a "real" diagnosis, even if we don't understand its causes.
Q: When should you be concerned that your doctor is
missing this syndrome?
A: Some questions to ask yourself: Do my doctor and I understand what's going on? Has anybody been able to explain what is the matter with me? FMS patients may arrive at a pain clinic with a long list of previous diagnoses but without a real plan for treatment. A wide variety of specialists see these patients. Rheumatologists were the first group to really look at FMS, because it resembles arthritis. I'm a physiatrist
(rehabilitation physician) who specializes in pain
management, and we see quite a few of these patients.
FMS still isn't very well understood, but we're trying.
This interview is not intended to provide advice on personal medical matters, nor is it intended to be a substitute for consultation with a physician.
Pain in the Brain
The good news? The hurt is all in your mind. The bad news? The hurt is all in your mind.
- - - - - - - - - - - - By Lynn O'Dell
Why does it hurt so much?
The book focuses on those uniquely human pains caused by our strange anatomy. A sampler: childbirth pain that stems from our huge heads, disk disease rooted in our upright posture and carpal tunnel syndrome resulting from overdeveloped thumbs whose massive nerve fibers must funnel through underdeveloped wrists.
Although we share some types of pain with animals -- even dinosaurs had blocked colons, Vertosick says -- humans make pain worse because of the added element of suffering. That is, we foresee the consequences of pain.
Vertosick, 45, who studied and trained at the University of Pittsburgh, also is the author of "When the Air Hits Your Brain: Tales of Neurosurgery" (1996), a tongue-in-cheek account of his journey from steelworker to neurosurgeon. He employs touches of that same sense of humor in "Why We Hurt."
When an extruded piece of disk material is absorbed and the nerve decompresses, he notes, the body is performing spinal surgery upon itself "without preapproval from an HMO." He writes vividly of pain: Herniated disk material "resembles lump crabmeat"; an accident patient remembers feeling his left arm "snap tautly, like a thick piece of taffy"; migraine pain is like a long-lasting version of the "ice cream headache or brain freeze" you get from drinking a milkshake too fast.
A migraine sufferer himself, Vertosick said in an interview with Salon that he wrote his latest book for people who have chronic pain -- "that's most adults at some point in their lives," he said -- as well as those of us who enjoy icky yet fascinating medical topics.
What's the short answer to why we hurt? Is pain just the body's way of warning us that something is wrong?
From an evolutionary point of view, pain pathways are so old they are paleo-pathways. They were around well before we had the capacity for abstract thought; they evolved when we were fairly stupid. We needed to be hurt to learn that fire is hot. To some degree, with cognition, pain has become a burden we really don't need but can't get rid of. It's a warning system that we just can't shut off, like the smoke alarm that goes off when you burn the toast.
How much of pain is psychological?
There's some psychic pain involved in all pain. If I twist my knee, immediately there's a certain degree of anguish. But a professional running back may twist his knee and perceive it with more anxiety and suffering. It's one thing to crack a tooth today, it's another to do it the day before your wedding. Uncoupling the physical and psychological perception of pain is a huge area of interest -- very cutting-edge -- in pharmacology today. In the '40s and '50s they made the serendipitous discovery that lobotomy patients no longer perceived pain as bad. It was stunning. That taught us that it's possible to unhook the bad perception of pain from the physical sensation of pain.
You write about a patient you call Jack, who had severe lower back pain that wasn't relieved by medication. Jack found relief in a magnetic vest advertised on television, and you concluded that it was his imagination, not the vest, that cured him. So was Jack's pain real?
The million-dollar question with pain medication is: When is pain real and when is it not? There's no technology on earth that can tell you that. If someone says they have a migraine, there's no way for you to know if they do, or if it's an eight or a 10 on a pain scale. The point of Jack's story was that there was a complaint and an intervention. The intervention made the complaint go away. Telling someone that magnets don't work is like telling them they don't look good in a toupee. They think they do. Pain medication has a lot in common with plastic surgery. It's not the surgeon's job to tell someone they'd look better this way. The surgeon must treat the person's perception of how they look. You have to acquiesce to that person's pain. For him it was real and that intervention [the vest] helped.
So even though you say there's no scientific way the magnets could work, you don't discourage your patients from using them or other alternative medical approaches?
If they are using them to cure cancer, that's another issue, but if a patient thinks it makes his quality of life better, who are we to say it doesn't? If it's not dangerous and it's not bankrupting you, fine. Some people say, "But we don't know how chiropractic works." Well, we didn't know how aspirin worked until 1975.
As someone who has seen a lot of different kinds, what's the worst kind of pain?
For me personally, it's dental pain. You've got all these dental nerves hanging out there, encased in little enamel housings. I didn't go into dental pain in the book. Trigeminal neuralgia is probably the closest thing to it -- those patients liken the pain to having your teeth drilled constantly. I know cancer pain is bad, but for acute pain, I think dental pain is the worst. It's not an accident that the general anesthesia we hail as a miracle was invented by dentists, not surgeons. I've had dental pain and from my personal, skewed belief, I'd rather have a migraine than a root canal.
What would you say is the good news in your book? That if you understand your pain you can begin to deal with it?
The good news is that the first step on the road to recovery is understanding what's going on. Some people don't want to know. For others, just telling them what's going on is an analgesic. You say, "That's just routine arthritis, do you want something for it?" They are reassured the pain is not something more serious, and they don't want anything.
Is the bad news that we can't escape pain? Is it just a fact of life that mankind can't ultimately control?
The bad news is that pain is like death. We can forestall it and modify it but we can't escape it. Pain is as old as death itself. There's a saying that you get into the world in someone else's pain and you get out of it in your own pain. It sounds dismal, but it's the lot of cognitive beings to have suffering. The good news is that we can control it better than nature can.
What's the best advice you can give someone suffering from chronic pain?
Be in the best physical condition you can. Eat well and exercise. Take good care of yourself. It's like money in the bank: Those in good physical shape, no matter of what age, are going to handle disease, illness and pain much better. Physically fit people just spring out of the hospital. The best general advice is to take care of your body. A lot of pain is the body's way of telling you that you're not keeping up your end of the bargain. Many people with chronic back pain come to me, and I tell them to go out and walk. I can't tell you the number of people it has helped. You hear about repetitive trauma all the time nowadays, but we have more problems from underusing our bodies than from overusing them. We can walk upright pretty well, so long as we aren't carrying an extra 50 pounds around with us.
- - - - - - - - - - - - About the writer: Lynn O'Dell is a freelance writer who contributes to the Los Angeles Times and other publications.
