Total knee replacement surgery, the second time around: learn from our experience

Nearly three years ago my husband had Total Knee Replacement (TKR) surgery. It’s drastic and major surgery, which people usually only choose when the pain from osteoarthritis becomes intolerable. And, it was not done properly so that last month it had to be re-done! Perhaps our experience can be useful to others.

Why do knees need to be replaced?

Generally because of pain and restricted motion caused by loss of cartilage (which cushions and separates the bony parts of a joint) and growth of bony “spurs”. This is labelled osteoarthritis. Other causes, like trauma, rheumatoid arthritis, and infection, account for a minority of the 300,000+ TKRs each year in the US.

As to what causes osteoarthritis, that is less understood than previously thought, when it was all blamed on “wear and tear”. The knee is the largest joint in the body, and bears the complete weight of the body at each step we take, so it is indeed subject to lots of “wear and tear”. Common-sense risk factors include types of high-stress activity in work or sports, injury, obesity, infection, stiffness from lack of activity, and age (since cartilage becomes more brittle with age). However, not all elderly people develop arthritis and some who do have no significant pain. This is why I said above that knees need to be replaced, not because of osteoarthritis, but because of pain and reduced range of motion.

The biologic factors leading to the deterioration of cartilage in osteoarthritis are not entirely understood. Many experts believe that osteoarthritis results from a genetic susceptibility that causes some biologic response to injuries to the joint, which in turn leads to progressive deterioration of cartilage. In addition, the ability to make repairs becomes progressively limited as cartilage cells age.

Although osteoarthritis generally accompanies aging, osteoarthritic cartilage is chemically different from normal aged cartilage. As chondrocytes (the cells that make up cartilage) age, they lose their ability to make repairs and produce more cartilage. This process may play an important role in the development and progression of osteoarthritis. [Emphasis mine. Source: www.healthcentral.com ]

What’s involved in Total Knee Replacement surgery?

The x-rays below, from the site of a prosthetics manufacturer,

show views of a knee before and after surgery. On the left, cartilage loss has caused bone-on-bone contact: very painful. Bone spurs or bits of broken bone floating around can also cause pain in the deteriorated joint. On the right, an artificial knee joint (prosthesis) is in place. (These are not x-rays of the same knee; in fact, looks to me like one’s a left leg and the other is a right leg.)

Here are some views of prostheses. To install them, the ends of the two long-bones of the leg, tibia and femur, are sawed off (removing “usually between 2 and 12 mm” according to one source) and the artificial joint is affixed with cement, screws, etc. The work involved in removing bone and attaching the prosthesis involves considerable force and power tools. Note that the knee-cap, as well as muscles and ligaments, must be carefully moved aside to install the prosthesis. [Picture sources: 1, 2, 3 ]

There are many patented designs for artificial knee joints, and these illustrations are for general example only. Surgeons have their preferred models; many were developed by orthopedic surgeons, and those surgeons tend to prefer the ones they have an interest in. Choice of prosthesis isn’t something the patient can weigh in on, we don’t know enough, but you may want to find out if your surgeon has a financial interest in the one he is going to use; if so, perhaps a second opinion would be valuable on the pros and cons of various types as applied to your individual case. Most insurance will pay for a second opinion for major surgery.

Research continues for better, longer-lasting designs and breakthroughs are regularly announced with fanfare––but some don’t fulfill their original promise, as with teflon-lined joints which wore away much faster in practice than lab tests had predicted. You will have to rely on the experience of your surgeon.

You can see photos of the stages of knee surgery (not for the faint-hearted) here, on a prosthesis company ’s site.

Our experience

Surgery #1, 2006

Now, back to my husband’s case. Dan had knee pain for years that ruled out unnecessary walking, as in hiking or walking for enjoyment, and interfered with sleep. There was bone on bone contact and perhaps bone spurs or growths from osteoarthritis. In August 2006 he underwent total knee replacement surgery by an established older orthopedist in our area. Afterwards, the surgeon came out to me in the waiting room and told me that the operation had taken half again as long as planned because they had “run into something unexpected”. Later, when we knew more, that remark would have much more significance to us. The “something unexpected” was apparently the result of a broken leg at age ten, that had caused greater reliance on the other leg (the one that received the TKR).

The surgery was brutal, with terrible bruising all over the leg, and post-op pain and swelling were severe. From the beginning, the prosthesis felt loose and insecure, sometimes the knee buckled, and after the post-surgical pain subsided, he was still in pain sufficient to make walking difficult. At each visit with the surgeon Dan raised these issues and was told to exercise more, and that it would get better with time. Two years on, that hadn’t happened, and the surgeon then agreed that the knee was a bit loose and offered to go back in and “put a shim in it”.

At some point after the 2006 operation, when it became apparent that it had been unsuccessful, I began to research the subject. Immediately I found that it’s common practice now to use Magnetic Resonance Imaging before TKR, rather than merely relying on x-rays. MRIs provide an exact and minutely detailed three-dimensional picture of the joint. The data can be used to make a 3-D visualization that can be rotated. This way the surgeon knows exactly what to expect; the prosthesis is customized, if necessary, beforehand; the surgery is generally shorter and the incision may even be smaller. (Other advances, such as computer-assisted orientation systems to guide the surgeon in positioning the prosthesis during surgery, may also be used.) Nothing like this was done in Dan’s case, and we didn’t know to ask about it. We know now that the original surgeon does have access to an MRI, in the hospital across the street from his office, and used it to look at Dan’s hip after the bad artificial knee began to cause a lot of pain in his hip, back, and other knee. But he didn’t use it for the knee needing replacement.

Surgery #2, 2009

Finally, after the remark about putting in a “shim”, we began to look for another surgeon. I searched online for someone who used MRIs and computerized techniques for joint replacement and who was experienced in what I learned is called “revision” (re-do) of TKRs. (Some surgeons, including the only other ones in our area, won’t touch someone else’s failures.) I found a surgeon who met these qualifications, about 4 hours drive from where we live, and we went to see him. The first thing he did was to get a full-leg digital x-ray, which surgeon #1 had never done. He showed us the x-ray, and used software to examine the precise alignment of the prosthesis. It was 7.5° out of alignment. In effect, his lower leg-bone had been detached and then put back on at a different angle from the upper leg. For over two years the first surgeon had taken no steps to examine the results of his surgery, other than feeling the knee.

We liked what we saw here, added to what we already knew about Surgeon #2’s experience, and proceeded with the preparations for a revision.

In late May Dan went through the revision surgery. Pry off the old, shave off a little more bone, affix the new.

When the surgeon met with me afterward in the waiting room, he had troubling things to report but they weren’t about what had just taken place. He told me that the prosthesis he had removed was badly installed. He actually used the word “sloppy”––and you know how rare it is for doctors to criticize one another’s work! The lower part was out of alignment both front-to-back and side-to-side; the upper part was supposed to be stabilized by the bone growing into it on all sides, but this had not taken place (he remarked that he did not use this model because sufficient bone regrowth often failed to occur). So this artificial joint had been loose and seriously mis-aligned, with every step stressing both parts of the prosthesis, the ends of the bones, the muscles/ligaments/tendons, and the other joints involved in walking (back, hip, other knee). It was clear, said the surgeon, that this had been causing Dan considerable pain, and he felt confident that the new prosthesis was going to be a great improvement.

Today is post-op day 19, and there is no comparison between the two post-op experiences. The day after the surgery they got Dan on his feet, and the first time he put his weight on the new knee he said that it felt more solid than the old one ever had. The next day he was walking the hall, slowly, and walking without hip pain for the first time in ten years. Bruising of the leg is minimal, the incision is shorter, and pain is less. The first time he was using fentanyl patches, very heavy opioid painkiller, and was still in too much pain. This time it is Tylenol-3 every 4 hours, and ultram (tramodol) occasionally when needed.

The incision is closed with superglue, covered with crossways lengths of what looks like strapping tape: no staples to distort the skin and then have to be removed. He was able to take a short shower on post-op day 5. Last time the first shower was not permitted nearly so soon and he was in so much pain he had to sit down on a plastic bench in the shower. This time, he was easily able to stand and feel secure. He’s in pain, but not nearly as much as last time, and the solidity of the knee makes it possible for him to get around the house carefully but confidently, only occasionally using his walking stick for stability (and to keep the dogs from bumping him).

Like the first time, the anesthesia was a spinal block (not general anesthesia) but the new surgeon added a femoral nerve block. As I understand it, the spinal keeps pain messages from reaching the brain during surgery; the femoral block keeps the nerves immediately affected by the surgery from registering pain which gets the nerves excited even though the brain doesn’t hear about it. It’s supposed to lessen post-op pain and it certainly seems to do that, especially for the first 24-36 hours.

There is swelling, but it’s not bad unless he keeps his leg bent too long while sitting; last time he was still mostly in bed for at least 2 weeks, and the swelling was severe from above the knee to the foot. Perhaps this is related to another difference in surgical procedure: this time a drain was placed near the incision with a receptacle attached which had to be periodically emptied of fluid, partly blood. Before the drain was removed, 1200 cc of fluid had been collected. The first surgeon did not place such a drain, the leg continued very swollen, and at the two-week check-up the surgeon had to use a syringe to remove at least 200 cc from the still very swollen knee. Doing this is risky because in raises the risk of infection, which would be a dire complication.

At this point the future looks very good for this new knee, and we are talking about being able to get out and hike with our dogs again. I still have limited energy (fibromyalgia) but more than I used to, since getting off of methadone which I took for pain.

Lessons learned

The parts of our experience that I think may be useful to everybody facing joint replacement surgery are these:

Research and ask questions. Get a second opinion.
This is major surgery which will shape your everyday life for the next decade or more. Revisions are to be avoided: not only because of pain and expense, but each surgery removes a little more bone. Don’t be afraid of getting a second opinion, even if your orthopedic surgeon seems great. Believe me, if your orthopedist were going in for brain or heart surgery, he or she would ask around, not just take the first name in the phone book! Insurance generally covers second opinions for major surgery.

Educate yourself about the surgery in general: what can go wrong, and why? what are the different methods?

In choosing a surgeon, standard advice is to find someone who has done this particular surgery a lot and does it regularly. That’s good advice, but incomplete. Our first surgeon had lots of experience and he performs knee replacements regularly. But based on results and what we’ve learned since, this fellow has not kept up with new methods: MRI’s, femoral nerve blocks, post-surgical drains, etc.

Of course nothing is better just because it is new. Some things provide an advantage even the layperson can evaluate, such as the use of MRI’s to see exactly what the joint and surrounding bone look like, so that the operation can be planned using that information. There’s no real downside for the patient in providing better information to the person doing the cutting and sawing. As for the high-tech implantable prostheses used in TKR, there’s always something new coming out, which may or may not be better. You can at least ask a surgeon how long he has been using the device he intends to implant into your body, what the failure rate is, and when and why it fails. Does it fail to be stabilized by bone growth, or do components or surfaces wear out? Does it loosen in 2 – 5 years, for whatever reason? Do particles get ground off and act like grit in a bearing?

Read up on the subject and you’ll get an idea of what to ask. Take notes on your reading and your concerns, and bring them with you; then take notes on what the doctor says. Have someone else come along to help by writing things down, reminding you of questions, and in general giving you moral support. The doctor is the expert, but your body is what’s at risk; don’t be timid about asking. In my mind, a doctor who won’t answer my questions fully, as fully as I want, doesn’t get my business.

Also ask what to expect after the surgery. Surgeon #1 kept stringing us along, telling us that things would get much better. Now we hear from others that isn’t really true, that you “know” right away. And indeed the bad job felt loose from Day 1 and never changed; the recent revision felt solid from Day 1. Certainly, telling us for 2 years that there would still be improvement, was unrealistic (charitable interpretation) and dishonest (blunt interpretation).

More information on Total Knee Replacement

There’s an encyclopedia-style summary of the procedure, risks, failures, etc. here that looked good to me, and another page on this site deals with TKR revisions (re-doing the TKR).
Wikipedia also has good information.

How to reduce the chances that you’ll need knee replacement surgery

It’s no fun, really. And you’ll get stopped by airport security for a special check, every time.

Photo from Wikimedia Commons.

Here’s the advice from the National Institutes of Health––

How Can People Prevent Knee Problems?

Some knee problems, such as those resulting from an accident, cannot be foreseen or prevented. However, people can prevent many knee problems by following these suggestions:

Before exercising or participating in sports, warm up by walking or riding a stationary bicycle, then do stretches. Stretching the muscles in the front of the thigh (quadriceps) and back of the thigh (hamstrings) reduces tension on the tendons and relieves pressure on the knee during activity.

Strengthen the leg muscles by doing specific exercises (for example, by walking up stairs or hills or by riding a stationary bicycle). A supervised workout with weights is another way to strengthen the leg muscles that support the knee.

Avoid sudden changes in the intensity of exercise. Increase the force or duration of activity gradually.

Wear shoes that fit properly and are in good condition. This will help maintain balance and leg alignment when walking or running. Flat feet or overpronated feet (feet that roll inward) can cause knee problems. People can often reduce some of these problems by wearing special shoe inserts (orthotics).

Maintain a healthy weight to reduce stress on the knee. Obesity increases the risk of osteoarthritis of the knee.

What Types of Exercise Are Best for People With Knee Problems?

Ideally, everyone should get three types of exercise regularly:

Range-of-motion exercises to help maintain normal joint movement and relieve stiffness.

Strengthening exercises to help keep or increase muscle strength. Keeping muscles strong with exercises – such as walking up stairs, doing leg lifts or dips, or riding a stationary bicycle – helps support and protect the knee.

Aerobic or endurance exercises to improve function of the heart and circulation and to help control weight. Weight control can be important to people who have arthritis because extra weight puts pressure on many joints. Some studies show that aerobic exercise can reduce inflammation in some joints.

If you already have knee problems, your doctor or physical therapist can help with a plan of exercise that will help the knee(s) without increasing the risk of injury or further damage. As a general rule, you should choose gentle exercises such as swimming, aquatic exercise, or walking rather than jarring exercises such as jogging or high-impact aerobics.

So there it is, same old thing: exercise and lose weight. If you really really do not want a titanium and plastic knee, losing weight is probably the best thing you can do. “Data from the first National Health and Nutrition Examination Survey (HANES I) indicated that obese women had nearly 4 times the risk of knee osteoarthritis as compared with non-obese women; for obese men, the risk was nearly 5 times greater.” Moreover, if you already have knee pain, losing even ten pounds can significantly reduce both pain and the ongoing deterioration of the knee. Being only 10 pounds overweight increases the force on the knee by 30-60 pounds with each step. You don’t need to reach your ideal weight; any reduction will help. And maybe that will be encouragement enough to keep going, slowly, losing weight and feeling better. (Thorough discussion of weight loss and osteoarthritis, here.)

Changing the American Health Care system

I responded to an email from moveon.org today, which wanted me to sign a petition to my Senators and Representative stating:

Full petition text:
“I strongly believe that Americans should have the choice of a public health insurance option operating alongside private plans. This will give them a better range of choices, make the health care market more competitive, and keep insurance companies honest.”

My convictions on this matter are different from moveon.org’s and from the position that Congressional Democrats like Baucus are putting forth, and so in the area for appending comments to be sent, I said:

Actually, this petition misrepresents my beliefs on this issue, based on 63 years of observation.

The single payer option is what we must adopt. A separate “public health insurance option “ will burden the taxpayer with the most expensive patients while the private plans take the profitable healthy younger patients. We have let this happen with FedEx and the Postal System, and private charter schools and public schools. The tax-supported option ends up with the mandate of accepting the part of the market that is least profitable.

We all know that the health care mega-corporations and industry groups will promise *anything* now, like a person being waterboarded. Five years from now will they be so devoted to the health of every American? No chance. And once this process is over, we are stuck with it—there will not be the political will to make substantial changes for another generation or more.

Mind you, I don’t think there’s much chance of a single-payer option coming to pass. American politics runs on money, and who’s got more of it than the “medical-industrial complex”? Americans have more passion and energy to invest in American Idol than in their own health and survival.

What the US now spends on health care

Here are some interesting figures, from the National Coalition on Health Care, a non-profit coalition bringing together “large and small businesses, the nation’s largest labor, consumer, religious and primary care provider groups, and the largest health and pension funds”, with 2 former presidents as Honorary Co-Chairs, Bush the first and Jimmy Carter. So their figures are likely to be well-researched and certainly not wildly radical.

National Health Care Spending

In 2008, health care spending in the United States reached $2.4 trillion, and was projected to reach $3.1 trillion in 2012.1 Health care spending is projected to reach $4.3 trillion by 2016.1
Health care spending is 4.3 times the amount spent on national defense.3

In 2008, the United States will spend 17 percent of its gross domestic product (GDP) on health care. It is projected that the percentage will reach 20 percent by 2017.1

Although nearly 46 million Americans are uninsured, the United States spends more on health care than other industrialized nations, and those countries provide health insurance to all their citizens.3

Health care spending accounted for 10.9 percent of the GDP in Switzerland, 10.7 percent in Germany, 9.7 percent in Canada and 9.5 percent in France, according to the Organization for Economic Cooperation and Development.4

footnotes refer to these sources:

1 – Keehan, S. et al. “Health Spending Projections Through 2017, Health Affairs Web Exclusive W146: 21 February 2008.

2 – The Henry J. Kaiser Family Foundation. Employee Health Benefits: 2008 Annual Survey. September 2008.

3 – California Health Care Foundation. Health Care Costs 101 — 2005. 02 March 2005.

4 – Pear, R., “U.S. Health Care Spending Reaches All-Time High: 15% of GDP.” The New York Times, 9 January 2004, 3.

“Infectious” vs. “contagious”

Just because we’re all hearing about H1N1 flu, and these terms are being used a lot, here’s the difference:

Infectious

1. A disease capable of being transmitted from person to person, with or without actual contact.
2. Syn: infective
3. Denoting a disease due to the action of a microorganism.

Contagious

Relating to contagion; communicable or transmissible by contact with the sick or their fresh secretions or excretions.
[from Stedman’s online Medical Dictionary]

Anthrax, for example, is infectious but not contagious. It is caused by a microorganism, the bacterium Bacillus anthracis, but it’s not “communicable or transmissible by contact with the sick or their fresh secretions or excretions”. People most often get anthrax from contact with infected hides or other animal products, and from soil where the hardy spores of the bacterium can remain for decades after being deposited by infected animals. [Such spore formation is known in only a few bacteria.]

There’s some confusion inherent in these terms because it seems that the “contact with the sick or their fresh secretions or excretions” part only applies to sick humans. You might get rabies from breathing in droplets of the saliva of an infected animal, but that is not considered to be contagion. As near as I can tell, anyway. So, since a human being with rabies doesn’t infect others, the disease is considered non-contagious.

An important factor in any contagious disease is how easily it is transmitted from one person to another. You can’t get HIV from touching the skin of an infected person, but influenza and the common cold can be transmitted that way. Shake hands with someone who just sneezed into his or her hand, and the bacteria are on your hand; when you touch your mouth, nose or eyes, the microorganisms can enter your system. TB is contagious, as is leprosy, but they are not transmitted by brief casual contact.

Right now the question about H1N1 flu is, how contagious is it? And then, how fatal is it? Influenzas mutate rapidly so the virus which seems to have originated in Mexico may be changing to something different as it spreads. Hence the reluctance of medical officials to make predictions about what is in store for the world with this disease.

An early warning system for health threats: the invaluable work of ProMED

ProMED Mail is one of the most important information resources on the net, and most of us have never heard of it. It’s an email list which describes itself as a “global electronic reporting system for outbreaks of infectious diseases and acute exposures to toxins that affect human health, including those in animals and in plants grown for food or animal feed”.

Unlike the official clearinghouses run by WHO and CDC, ProMED is, in its own words, “open to all sources” and its reports are freely available to us all. ProMED was first to raise concern about the aggressive respiratory disease spreading in China in 2003, which became known as SARS. Before the Chinese authorities had permitted their officials to report the disease to WHO, Catherine Strommen, an elementary school teacher in Fremont, California, spotted a post in an international teachers’ chat room from a concerned teacher in China describing “an illness that started like a cold, but killed its victims in days”.

Alarmed, Strommen emailed an old neighbor and friend, Stephen Cunnion, M.D., a retired Navy physician and epidemiologist who now lived in Maryland. A practical, no-nonsense man, Cunnion started searching the web. With no success, he tried a new tack—sending an email to ProMED-mail, a global electronic reporting system for outbreaks of emerging infections and toxins. After quoting Strommen’s missive, he asked: “Does anyone know anything about this problem?”

The tiny ProMED staff conducted its own web search. It, too, came up empty-handed. On February 10, it sent out to tens of thousands of subscribers a posting headed: “PNEUMONIA – CHINA (GUANGDONG): RFI,” or Request for Information.

Thus did the world first learn of SARS, the new and deadly infection that would kill 774 people and infect 8,000 in 27 countries.

From an article by Madeline Drexler in The Journal of Life Sciences.

H1N1 Reports (Swine-avian-human Influenza A)

To keep up on H1N1 flu [I agree with the pig farmers, “swine flu” sounds like your big risk is getting it from pigs and pork, not human sneezes and handshakes] check the ProMED main page. While all the media is now frothing over with “news” about this disease, some of it sounds as reliable as alien abduction accounts. ProMED is timely and scientifically accurate but understandable by non-biologists. It includes valuable, and interesting, commentary on reports and questions: “this has been reported, but here’s what we don’t know, or here are local factors that must be considered in evaluating it”.

What ProMED does

ProMED is a program of the International Society for Infectious Diseases which began in 1994. It does not simply print whatever comes in—this is an extremely well-moderated list. A group of specialists checks and filters the reports, seeks more information from local sources and other experts, and provides judicious commentary. This group also “scans newspapers, the internet, health department and government alerts, and other information sources for inklings that an infectious disease, perhaps not yet reported widely, is threatening animal, plant and/or human health.”

I think I first signed up to receive the digests back when “mad cow disease” was emerging, and have since used ProMED to follow diseases such as anthrax and Ebola.
A topic of interest to me recently concerns outbreaks of measles and mumps in Western nations due to falling rates of vaccination. And as a former zookeeper I keep up on diseases of wildlife and zoo animals, including the fungal disease threatening whole populations of wild bats in the Eastern US. ProMED also covers plant diseases (mostly of crops).

All of this, infectious diseases of humans, wildlife, and crops, is of greatly increased urgency because climate change, global transport, and destruction of wild areas all lead to the spread of familiar diseases to new locales and the emergence of “new” diseases previously only found in remote wild areas. With regard to contaminants and toxins, governments are unable to deal with this effectively due to the political power of corporations and lack f oversight in producing countries. ProMED can’t make your food and furniture non-toxic, but it can sound alarms that might otherwise be silenced.References to a topic’s prior appearances on the list are attached to current reports, and archives are easy to access. Editions in French, Portuguese, Russian and Spanish are now available.

“Each posting is limited to 25 KB bandwidth—to ensure that it slips through an old-fashioned dial-up modem in the most remote areas of the world (where new infectious threats tend to smolder). ‘We use technology that was state-of-the-art in 1994. We use email—plain-text email at that. We don’t use fancy fonts,’ Madoff says. ‘The power of the Internet is its ubiquity and speed; it’s not necessarily in all the neat things you can do.’ [from Drexler's article cited above]

You can subscribe here.

Toxins and contaminants

ProMED also collects, evaluates, and disseminates reports of health problems related to toxins and contamination of food and medicines. These can be quite unusual. For example, the case of the toxic leather sofas in Britain:

Photo: Effect on leg of reaction to toxic chemical contained in sofas. From BBC.

A judge [in the UK] is expected to order several retailers to pay millions of
pounds to people who suffered burns and rashes from faulty leather
sofas….

More than 1600 people claim to have been affected by the problem. Tens
of thousands more people could have burns not yet traced to sofas.
The High Street stores, along with 11 others, may have to pay more
than 10 million pounds [USD 14.3 million] in compensation and legal
costs, the shoppers’ lawyers say. They claim that makes it “the
largest group compensation claim ever seen in British Courts.”

The sofas, which were manufactured in China, were packed with sachets
of an anti-mould chemical called dimethyl fumarate to stop them from
going moldy during storage in humid conditions.

Commonly known as DMF, the toxic, fine white powder has been used by
some manufacturers to protect leather goods like furniture and shoes
from mold. Even very small amounts can be harmful.

One sofa customer, who is well aware of the health problems caused by
her purchase, is a customer who bought a leather sofa suite from
Argos in April 2007. Almost a year later, she started to notice a
rash developing on her arms and legs. After a few weeks, her skin
started flaking off. She says the irritation was so bad, she was off
work for 2 months. This customer was seen by more than a dozen
doctors, who couldn’t work out what was causing the rash.

She said: “It was very, very painful; I couldn’t sleep at night; I
couldn’t walk about; I couldn’t drive; every time I did walk about,
the skin would fall off, and I would leave a trail of it, therefore,
I couldn’t go to work.”

Reliable histories of outbreaks/events

ProMED doesn’t just present breaking news and requests for additional reports; it frequently publishes very useful summaries of what’s been learned, and what action governmental agencies have taken. For example, “Melamine contaminated food products – Worldwide ex China” and “Prion disease Update 2009 (01)” (Mad Cow Disease and its human infectious disease, the fatal “variant Creutzfeldt-Jakob disease”.

Supporting ProMED

Believe it or not, ProMED is supported by individuals, with not a penny of funding from any government. That means they are independent (remember the movie Jaws, where the city council wants to suppress news of the shark attacks?) and fast to react. They sift a lot of news from all sorts of sources, put out calls for more information, and disseminate news in a responsible way.

If the work of this group seems like something you’d like to support, here’s your chance. They’re having a brief Spring fundraising campaign. To quote their email,

Your gift funds quick information every day – The economical, low-tech computer programs we use enable us to speed ProMED to your mailboxes, to post it online where anyone can find it, , and to provide the administrative services (accounting, office space, cell phone connections, etc.) required to support a small, agile worldwide enterprise.

ProMED-mail reaches over 50,000 public health officials, students, journalists, agricultural specialists, infectious disease professionals and others around the globe. Because it is free, subscribers in more than 187 countries have an equal opportunity to know when a disease outbreak occurs — and can spring into action when necessary to prevent or minimize its spread.

If the Spring campaign is past, here’s the main donations page.

Bad Science: Housework helps combat anxiety and depression

I’m a subscriber to New Scientist, the British weekly magazine of science news for the rest of us. I subscribed to Science for a while too, because it publishes researchers’ actual articles, but decided I’d rather have more numerous reports with less math. New Scientist contains short reports and a few longer articles as well as interviews, and a great feature at the end where people write in requesting explanations for odd observations (very British, I think, in the tradition of the journal Notes and Queries (1849 – present), or letters to the London Times from country parsons reporting the first sighting of a bird).

Anyway, though I still find NS interesting and valuable, I’ve begun to feel they are sometimes sacrificing science for snappy headlines. Here’s an example that is from a while ago, but quite illustrative.

Housework helps combat anxiety and depression

FEELING down? You might be able to dust away your distress. Just 20 minutes a week with the vacuum cleaner or mop is enough to help banish those blues, and sport works even better.
That’s the message from Mark Hamer and his colleagues at University College London, who wanted to find out what benefits arise from different types of physical activity. They examined data from questionnaires filled in by almost 20,000 Scottish people as part of the Scottish Health Surveys, carried out every few years. Some 3200 respondents reported suffering from anxiety or depression, but those who regularly wielded the mop or the tennis racket were least likely to suffer, the researchers report (British Journal of Sports Medicine, DOI: 10.1136/bjsm.2008.046243).

One 20-minute session of housework or walking reduced the risk of depression by up to 20 per cent. A sporting session worked better, reducing risk by a third or more. Failing housework or sport, says Hamer, try to find something physical to do. “Something – even for just 20 minutes a week – is better than nothing.”

––From issue 2652 of New Scientist magazine, 19 April 2008, page 4-5. Abstract of original available free, entire article requires fee to BJSM.

Why we shouldn’t believe this

In New Scientist’s brief bit, there’s absolutely no evidence for a causal relationship between exercising and being less depressed. It’s an example of the frequent, but quite false, assumption that because two things are associated, one causes the other. Other relationships are quite possible. Does physical activity really reduce depression and anxiety, or are the people who actually do housework or sports simply the ones who have less severe symptoms to start with? Or is there some other connexion altogether? Nothing in the New Scientist, or the article abstract, addresses that question. But it makes an eye-catching headline, to say that housework cures depression.

To investigate the question scientifically, it is necessary to take a large number of depressed people and randomly assign them to one of three groups: an exercise group, a control group given some other task like filling in a weekly questionnaire or reading about depression, and a third group who don’t get any new activity or other attention from the researchers. (Ideally those doing the testing and analysis don’t know which group is which.) Then, at the beginning and end of the study, measure psychological state using some accepted reliable tests and see what changes. Finally, use statistical analysis to see if the changes are significant or might be due to chance. [Even after that, other factors may make the apparent conclusions false: maybe the exercise was not enough to have an effect, or during the study the country went to war and everybody stayed depressed, or the social aspects of being in an exercise group had more effect than the actual jumping and sweating did.]

No doubt such a study has been done, probably more than once; advising depressed people to get more exercise is a standard approach and insurance companies would love to fund the research to support it. Mark Hamer might have cited previous work in the full text of his article in the British Journal of Sports Medicine (which New Scientist should have read before writing their brief and provocative piece) but we readers have no way of knowing this.

In this particular case––the effect of exercise on individuals––researchers would have to be vigilant about the distortion of results due to participants dropping out or failing to comply with the activity levels. Even the method of choosing participants can affect reliability of results: if the depressed people are chosen from those who show up at clinics, their symptoms may be overall less severe than the symptoms of people too depressed even to go to a clinic.

A similar example: exercise and fibromyalgia

I have fibromyalgia, and some researchers have pronounced aerobic exercise to be beneficial for reducing the symptoms of this condition’s chronic pain and fatigue. Exercise is fundamentally a good thing, I agree. It distracts one from symptoms, adds an interest, may confer a feeling of control over one’s illness, strengthens muscles, promotes growth of new neurons in the brain, and can improve flexibility.

But. In moderate to severe cases of fibromyalgia, even mild exertion can cause greatly increased pain and exhaustion. Unlike the familiar “weekend athlete” reaction, the increased pain and fatigue may last a week or several weeks. This means that for some individuals the goal of walking briskly for a few blocks could take years to attain, since we are knocked back to the starting point when we overdo, or when something else in our lives like a cold or interrupted sleep aggravates our symptoms.

Some time ago I read a review article which gathered the results of a number of studies on exercise and fibromyalgia, and I noted that in some the dropout rate was high but wasn’t mentioned in interpreting the data. And then there are people, like myself, who would never enroll in an aerobic exercise program because we’ve “been there, done that” and it was painful and unproductive. If we’re not counted, and a high dropout rate is glossed over, then to whom do the results apply?

What can we say about exercise, then?

I am skeptical of the efficacy of exercise as a general one-size-fits-all prescription for fibromyalgia or depression. I would suggest the fibromyalgia studies really show that exercise appears to be helpful for those people able to endure it, but, while all patients should be encouraged to do appropriate activities as tolerated, there’s a need to be gradual and cautious. Some patients may never be able to attain exercise levels that make appreciable improvements to their symptoms, despite sincere efforts. (This doesn’t mean that exercise is without benefits to them, though. My level of physical activity doesn’t seem to help my pain, fatigue, or quality of sleep, but I’m much happier when I get out for a walk or a bit of gardening.) At an education class on fibromyalgia, I heard someone ask “How can I exercise when even walking around the house is too strenuous?” The reply was, “Can you get up and walk all the way around your kitchen table? Good. Start with that and work up.” Sensible advice, but actual improvement in symptoms may be a very long time in coming for that person.

For depressed people, exercise is unlikely to be harmful and may indeed help––I myself believe that it does––but there’s no evidence of that in the New Scientist account of Mark Hamer’s work.

I felt this was worth writing about for two reasons, one general and one particular. It’s a good example of how the media gives us accounts of scientific research without the details needed to evaluate them. And, invisible conditions like fibromyalgia and depression are different from most other health problems. They are regarded by many as non-ailments or personal weakness/malingering, so it is easy for “exercise may help” to become “quit complaining, pull up your socks and get on with it”. From there it’s a short step to “all these patients could feel better but they just won’t do the work necessary; they cling to their disease.”

And I have to admit that the example used, housework, was particularly galling to me. While there are people who can enjoy housework as a zen activity, or feel great satisfaction at making their floors and sinks shine, most of us (male or female) do not get much pleasure at all from it. Every time you do it, next day there it is again, dirty dishes, laundry piling up, dog hair floating across the floor. Truly, housework is never done. And, given that housework is still seen more as a woman’s responsibility than a man’s, and that women have a higher rate of depression than men, the “FEELING down? You might be able to dust away your distress” line seems offensively sexist and dismissive.

B Vitamins may reduce risk of macular degeneration

I get “headline summaries” of health-related research from docguide.com, and one of last week’s headlines was “Vitamin B Combination Plus Folic Acid May Reduce Risk of Age-Related Vision Loss”. Age-related macular degeneration, or AMD, is pretty common on older people: one large study found that people in middle-age have about a 2 percent risk of getting AMD, but this risk increased to nearly 30 percent in those over age 75. There are increased-risk factors such as gender (female), race (white), smoking, obesity, and family history of the disease.

My husband’s mother has AMD, so I’ve seen its effects and I immediately went to read the article as summarized at docguide:

Taking a combination of vitamins B6 and B12 and folic acid appears to decrease the risk of age-related macular degeneration (AMD) in women, according to a study published in the February 23 issue of Archives of Internal Medicine.

William G. Christen, Brigham and Women’s Hospital, and Harvard Medical School, Boston, Massachusetts, and colleagues conducted a randomised, double-blind trial involving 5,442 women aged 40 years and older who already had heart disease or at least 3 risk factors. Of these, 5,205 did not have AMD at the beginning of the study.

In April 1998, the women were randomly assigned to take a placebo or a combination of folic acid 2.5 mg per day, vitamin B6 50 mg per day, and vitamin B12 1 mg per day. Participants continued the therapy through July 2005 and were tracked for the development of AMD through November 2005.…

Women taking the supplements had a 34% lower risk of any AMD and a 41% lower risk of visually significant AMD. “The beneficial effect of treatment began to emerge at approximately 2 years of follow-up and persisted throughout the trial,” the authors wrote.

Because the findings apply to the early stages of disease development, these supplements appear to represent the first identified way––other than not smoking––to reduce the risk of AMD in individuals at an average risk. “From a public health perspective, this is particularly important because persons with early AMD are at increased risk of developing advanced AMD, the leading cause of severe, irreversible vision loss in older Americans,” wrote the authors.

Beyond lowering homocysteine levels, potential mechanisms for the effectiveness of B vitamins and folic acid in preventing AMD include antioxidant effects and improved function of blood vessels in the eye, the authors noted. [or see the full text as published in Archives of Internal Medicine]

A reliable study?

As you can see, this study has a lot of factors that give its findings credence: a large sample size (albeit all female), random assignment of the subjects to receive vitamins or placebo, and double-blinded protocol (neither the participants nor the medical professionals working with them knew whether they were taking placebo or vitamins). And the study lasted for 7 years, allowing time both for the development of AMD, and for the vitamins’ preventive action, if any, to have an effect. Longer is generally better in epidemiological studies; given the expense of long-term studies, though, 7 years is longer than many. The authors caution that “… our findings could be due to chance and need to be confirmed in other populations” but that doesn’t indicate misgivings on their part, it’s a standard caveat of good scientists. One swallow does not make a summer, as Aristotle observed. Being able to replicate results is a fundamental part of the scientific method.

One non-random element was that the women “already had heart disease or at least 3 risk factors” for it, so they may be expected to have a higher than average incidence of circulatory problems. If that means they had a greater-than-average risk of getting AMD, which is in part a circulatory disease, then the efficacy of the vitamins may appear more dramatic than if administered to a truly random population where only some individuals have heart disease or risk factors for heart disease.

Practical implications

What about the amounts of B6, B12, and folic acid that were given? I went at once to see how much we get from the two vitamins we take each day, a multi-B and a regular multi-vitamin/mineral combination. Here’s what I found out:

The supplements we take at our house supply much less than the amounts used in the study.

That brings up two new questions:

Would it be safe to take such high levels? and
How much do we need to take to get the effect (assuming that the effect seen in the study is real)?

The second question is easier to answer: we don’t know. The study used high amounts, no doubt to be more certain of seeing any possible connexion. Lower levels might work, but that must await another study.

The first question has no definitive answer either. If you want my guess, it is that yes, it’s probably safe, but I’ve never even played a scientist on TV, so who am I to say? Below, I present the results of some quick research on safe levels of these vitamins, which indicate that probably the high levels are safe.

But first let’s consider some common-sense indicators. We can give some weight to where the authors work: Brigham and Women’s Hospital, Harvard Medical School; Departments of Biostatistics and Epidemiology, Harvard School of Public Health; and the National Eye Institute, Bethesda. The study participants were female health care professionals, not poor women in a remote country. While the potential conflict of interest statements at the end of the article reveal some funding from pharmaceutical companies, such companies generally don’t make much from vitamin preparations because they can’t really be patented to prevent others from selling similar products. Cynically, I conclude that respected ivy-league docs, with fellow health-care professionals as their guinea pigs, and no big money to tempt them, are probably not going to take risks by knowingly pushing the limits on safe levels of the study drugs.

Now for some numbers. The “Safe” levels in the chart above are from the Council for Responsible Nutrition, self-proclaimed to be “the leading trade association representing dietary supplement manufacturers and ingredient suppliers”. Those levels are conservative.

Two other kinds of data are known as NOAEL: No-observed-adverse-effects-level, and
LOAEL: Lowest-observed-adverse-effect level. Vitamin B6 has been tested up to levels of 200 mg/day without seeing any adverse effects, and for B12 up to 5 mg/day has been given before adverse effects were observed. These levels are well above the amounts used in the study. For folic acid, while “safe” levels have been named, there appears to be no research which has established NOAEL or LOAEL. [data from US Government sources compiled by Judy A. Driskell, Professor of Nutritional Science and Dietetics at the University of Nebraska]

Another reassuring fact is that all three of these vitamins are water-soluble, so they do not accumulate in the fatty tissues; excess is excreted in the urine.

Why are supplements necessary for these vitamins?

No one is likely to get the amounts used in the study, solely from unsupplemented foods. (See US Government charts of food nutrients, B6, B12, Folic Acid (folate).)

For example, to get 50 mg of B6, you’ll need to eat about 70 bananas or medium baked potatoes––and these are the two foods highest in that vitamin. Cold cereals are highly fortified, but it takes about 30 cups of fully fortified cereal to give you 50 mg, according to the government chart. For 2.5 mg of folic acid, get to work on putting away more than 2 pounds of cooked beef liver each day, or about 5 cups of fully fortified breakfast cereal.

If you are like me, you are wondering how people were ever healthy when all they had to eat was plain old food without any vitamin supplements, and no fortified cereal, bread, and milk. One answer, of course, is that our forebears often did suffer from vitamin deficiencies. It wasn’t just sailors on long voyages getting scurvy. And some conditions, like AMD, turn up more frequently now because more people live to the age where they occur. It is intriguing to wonder, though, what other factors may be at work when mega-levels of nutrients (far beyond those found in food) seem to protect against ailments. Perhaps the overall nutrient and micro-nutrient levels of our food are lowered by depleted soil in which crops (including animal feedstuffs) are grown, loss of nutrients during shipping and storage, and other elements of the modern commercial food business. Maybe we don’t get some as yet unknown nutrients which potentiate our use of other nutrients.

For my part, I’m going looking for supplements with higher doses of these three B vitamins. I may not end up with quite the levels used in the study, but I’ll see how close I can get within the limits of budget and willingness to swallow a bunch of pills.

Dr. House’s writers betray pain patients

As a chronic pain patient who took methadone for years, and experienced a lot of misunderstanding from medical professionals and laypersons about addiction, I greeted the House series with hope when I first saw it. It’s smart and interesting as tv goes, and Hugh Laurie is a fine actor who has done well with the unusual role. But beyond that, I thought having a chronic pain sufferer as a main character presented a great opportunity to break the stereotype that “taking pain meds longterm = addiction”. Dr. Gregory House is certainly well-informed about medical science as opposed to drug war hysteria, and no one can deny that he’s assertive!

Source unknown, appears only on generic odd picture sites. Found with Google image search.
House’s halo may fade as you read on.

However, the writers and producers are promoting the familiar hackneyed clichés about addiction–––worse, these clichés are false and are no longer accepted in current medical thought. And House, of all people, is represented as knowing no better, and accepting the label of “addict”.

Two of the doctors House works with (his boss Cuddy and his friend Wilson) say frequently that House’s professional and personal abilities are being damaged by his “addiction” (his everyday use of vicodin for constant severe pain in his leg), and this conflict has played out in many episodes in the first three years. [We never seem to watch the Fox channel, so we see House in reruns on other channels; if there has been a drastic change in the last season I wouldn’t know about it. But I doubt there’s been a change in a theme which has been used so often.]

I was moved to write this by seeing again the old episode titled “Detox” (episode 11, season 1, 2005). Cuddy challenges him to go a week without vicodin to “prove he’s not an addict”. House accepts the challenge, his prize being a month of no clinic duty, and he also accepts the premises: that if he shows signs of physical withdrawal it means he is addicted. He does show these signs, though he tries to hide or deny them, and he also suffers greatly increased pain. Feeling nauseated, he’s told that it’s withdrawal, and replies “No, I’m in pain. Pain causes nausea.” Maybe so, but withdrawal from opioids does too. Finally the pain and withdrawal symptoms make it impossible for him to function as his usual professional self: hyper-smart and intuitive diagnostician. A patient is depending on him, and so are his diagnosticians-in-training, and one of the latter gives him some vicodin and tells him to take it because he’s not able to do what needs to be done.

At the end, asked what he has learned, House says (close paraphrase): I’m an addict….But I’m not going to quit…I pay my bills, I work, I function.

His friend Wilson says, You’ve changed, you’re miserable and you’re afraid to face yourself…Everything’s the leg, nothing’s the pills?

House: They let me do my job, and they take away my pain.

So, House won’t abandon the vicodin because he cannot function without pain relief, but he caves to the notion that he is an addict.

There are so many things wrong with this, and the writers of a medical show ought to know better.

Addiction Versus Dependence

The refusal to distinguish between these two terms has cursed our management of pain for fifty years or more. But in the last couple of decades medicine has, at last, officially separated the two. Here is a discussion of the terminology from an authoritative source, a Consensus Document issued jointly by The American Academy of Pain Medicine, The American Pain Society and the American Society of Addiction Medicine, called Definitions Related to the
Use of Opioids for the Treatment of Pain. [I quote at length, so it will be clear that this represents exactly and completely the sense of this document. Emphasis is added.]

BACKGROUND

Clear terminology is necessary for effective communication regarding medical issues. Scientists, clinicians, regulators and the lay public use disparate definitions of terms related to addiction. These disparities contribute to a misunderstanding of the nature of addiction and the risk of addiction, especially in situations in which opioids are used, or are being considered for use, to manage pain. Confusion regarding the treatment of pain results in unnecessary suffering, economic burdens to society, and inappropriate adverse actions against patients and professionals.

Many medications, including opioids, play important roles in the treatment of pain. Opioids, however, often have their utilization limited by concerns regarding misuse, addiction and possible diversion for non-medical uses.

Many medications used in medical practice produce dependence, and some may lead to addiction in vulnerable individuals. The latter medications appear to stimulate brain reward mechanisms; these include opioids, sedatives, stimulants, anxiolytics, some muscle relaxants, and cannabinoids.

Physical dependence, tolerance and addiction are discrete and different phenomena that are often confused. Since their clinical implications and management differ markedly, it is important that uniform definitions, based on current scientific and clinical understanding, be established in order to promote better care of patients with pain and other conditions where the use of dependence-producing drugs is appropriate, and to encourage appropriate regulatory policies and enforcement strategies.

RECOMMENDATIONS

The American Society of Addiction Medicine (ASAM), the American Academy of Pain Medicine (AAPM), and the American Pain Society (APS) recognize the following definitions and recommend their use:

ADDICTION

Addiction is a primary, chronic, neurobiologicneurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

PHYSICAL DEPENDENCE

Physical dependence is a state of adaptation that often includes tolerance and is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist…

TOLERANCE

Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time.


DISCUSSION

Most specialists in pain medicine and addiction medicine agree that patients treated with prolonged opioid therapy usually do develop physical dependence and sometimes develop tolerance, but do not usually develop addictive disorders. However, the actual risk is not known and probably varies with genetic predisposition, among other factors. Addiction, unlike tolerance and physical dependence, is not a predictable drug effect, but represents an idiosyncratic adverse reaction in biologically and psychosocially vulnerable individuals. Most exposures to drugs that can stimulate the brain’s reward center do not produce addiction. Addiction is a primary chronic disease and exposure to drugs is only one of the etiologic factors in its development.

Addiction in the course of opioid therapy of pain can best be assessed after the pain has been brought under adequate control, though this is not always possible. Addiction is recognized by the observation of one or more of its characteristic features: impaired control, craving and compulsive use, and continued use despite negative physical, mental and/or social consequences. An individual’s behaviors that may suggest addiction sometimes are simply a reflection of unrelieved pain or other problems unrelated to addiction. Therefore, good clinical judgment must be used in determining whether the pattern of behaviors signals the presence of addiction or reflects a different issue.

Behaviors suggestive of addiction may include: inability to take medications according to an agreed upon schedule, taking multiple doses together, frequent reports of lost or stolen prescriptions, doctor shopping, isolation from family and friends and/or use of non-prescribed psychoactive drugs in addition to prescribed medications. Other behaviors which may raise concern are the use of analgesic medications for other than analgesic effects, such as sedation, an increase in energy, a decrease in anxiety, or intoxication; non-compliance with recommended non-opioid treatments or evaluations; insistence on rapid-onset formulations/routes of administration; or reports of no relief whatsoever by any non-opioid treatments.

Adverse consequences of addictive use of medications may include persistent sedation or intoxication due to overuse; increasing functional impairment and other medical complications; psychological manifestations such as irritability, apathy, anxiety or depression; or adverse legal, economic or social consequences. Common and expected side effects of the medications, such as constipation or sedation due to use of prescribed doses, are not viewed as adverse consequences in this context. It should be emphasized that no single event is diagnostic of addictive disorder. Rather, the diagnosis is made in response to a pattern of behavior that usually becomes obvious over time.

Pseudoaddiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may “clock watch,” and may otherwise seem inappropriately “drug seeking.” Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.

Physical dependence on and tolerance to prescribed drugs do not constitute sufficient evidence of psychoactive substance use disorder or addiction. They are normal responses that often occur with the persistent use of certain medications. Physical dependence may develop with chronic use of many classes of medications. These include beta blockers, alpha-2 adrenergic agents, corticosteroids, antidepressants and other medications that are not associated with addictive disorders.

How important are definitions?

Few things are more important. We interact with the world through language. Words cause emotional reactions, compose our thoughts, represent us to others. Would you want to be introduced to a group of strangers as an “addict” or as a “pain patient”?

Let’s look at the decision to replace “addiction” with “dependence” in the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). This thick volume is the official dictionary and guide for defining mental disorders, including addictive behaviors. (Change in the DSM can contribute to profound social and legal change––as when, after a series of redefinitions, homosexuality was finally removed from the list of disorders in 1987.) An editorial in the American Journal of Psychiatry (2006) discusses this decision to use “dependence” not only to describe physical dependence, but also for addiction, as differentiated in the document quoted above.

All of the authors of this editorial are involved in the next revision of the DSM (DSM-V), and one has been part of the revisions since the 1980’s. They favor changing back to a distinction between “addiction” and “dependence,” and describe how the decision was made to merge both into “dependence”:

Those who favored the term “dependence” felt that this was a more neutral term that could easily apply to all drugs, including alcohol and nicotine. The committee members argued that the word “addiction” was a pejorative term that would add to the stigmatization of people with substance use disorders. A vote was taken at one of the last meetings of the committee, and the word “dependence” won over “addiction” by a single vote.

It was a victory for Political Correctness!

The authors criticize the widening of the term because of the negative effect on pain patients:

This [redefinition] has resulted in confusion among clinicians regarding the difference between “dependence” in a DSM sense, which is really “addiction,” and “dependence” as a normal physiological adaptation to repeated dosing of a medication. The result is that clinicians who see evidence of tolerance and withdrawal symptoms assume that this means addiction, and patients requiring additional pain medication are made to suffer. Similarly, pain patients in need of opiate medications may forgo proper treatment because of the fear of dependence, which is self-limiting by equating it with addiction.

A Canadian article (2006) describes the reluctance of many physicians to prescribe opioids for pain, and why they are reluctant:

In a recent national survey, 35% of Canadian family physicians reported that they would never prescribe opioids for moderate-to-severe chronic pain, and 37% identified addiction as a major barrier to prescribing opioids. This attitude leads to undertreatment and unnecessary suffering.

This is over one-third of Canada’s doctors who will never “prescribe opioids for moderate-to-severe chronic pain” no matter what. We cannot know how many would do the ethical thing and refer such patients to someone more experienced in treating pain, and how many just leave the patients to their own devices. If 35% would never prescribe opioids, some additional percentage would fall into the “rarely” category, which also results in undertreatment of pain.

Why does medical opinion on a fictional TV show matter?

Current medical “best practices” and principles regarding the differentiation of addiction from dependence have been slow to reach doctors and other medical professionals, let alone the public. Of course doctors should not be getting their medical information and attitudes from television, but television has a strong influence on viewers who know little about the topic presented–that’s all of us who are not medically trained. A person who believes that taking opioids results in addiction is far less likely to push for adequate pain treatment for him/herself, or family, and may even reject it if offered. If friends, relatives, and employers of pain patients share the confusion about addiction, they will exercise social pressure or threaten loss of employment. So the attitudes promoted by a popular TV show––in the US, House was the most-watched scripted program on TV during the 2007–08 television season––can have profound effects on the health care people receive.

When House stops taking the vicodin, he suffers headaches, sleeplessness, nausea, inability to concentrate, and irritability. All are symptoms of physical dependence, as in the definition paper cited above. That these same symptoms are felt by addicts is beside the point: addicts and chronic pain patients both are physically dependent, and both will suffer similar withdrawal symptoms as a result. For the pain sufferer, the symptoms of increased pain are added.

As a pain patient, I have experienced withdrawal from methadone. It is hell. It gave me much more compassion for addicts. Yet, in trying to get off methadone “cold turkey” when my doctors claimed they could not assist me, I went through seven days and nights of absolutely no sleep, intense physical and mental suffering from the withdrawal, and increased pain. There’s the pain you were medicating, and in addition the cessation of methadone makes all your bones ache, worse than any flu. And all this time the methadone was on the shelf. Untouched. Not typical addict behavior. On the eighth day with no sleep I realized that there had been no lessening of my symptoms, and that I could not endure it another 24 hours, so with distaste and reluctance I began taking the methadone again. I resolved then that I needed to find different doctors, who would help me through this, and subsequently did so with complete success. (I wrote about this in an earlier post.)

In my case the pain being treated had changed (improved, by a nerve block) during my time on opioids; the increased pain I had during withdrawal was nothing like that which House suffered from his leg. He showed great fortitude and self-control, but while dramatic it was medically pointless. The man has pain so bad he cannot function if it is not controlled; if nothing else works other than opioids, then that’s what he needs to use. Current medical thought recognizes this; the writers of the show do not.

Some of the behaviors relative to pain medication shown by House are reprehensible, such as stealing medication and forging prescriptions. This seems like classic drug addict behavior. But see the paragraph above on Pseudoaddiction, including the statement “Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.” In fact, much of House’s often-criticized behavior has to be considered in light of the fact that even the vicodin never adequately relieves his leg pain. Irritability, mental and physical restlessness, combativeness, and harsh remarks can be the signs of unrelieved physical pain.

Chart from “Pain Assessment in Older Adults” (2006). The source references mentioned at the bottom of the chart are : 8. The management of persistent pain in older persons. American Geriatric Society (AGS) panel on persistent pain in older persons. J Am Geriatr Soc. 2002;50:S205-S224; and 9. Ferrell BA, Chodosh J. Pain management. In: Hazzard WR, Blass JP, Halter JB, et al. Principles of Geriatric Medicine and Gerontology. 5th ed. New York: McGraw-Hill Inc; 2003:303-321.

We have been told that even before his leg injury, House wasn’t a sunny sociable person. But he’s gotten worse since then, and in the show the doctors around House nearly always blame his pills––his addiction–not his pain.

Addicts and pain patients, differences and similarities

I intended to include some data here about the low actual rate of addiction (not dependency) in pain patients as a result of taking pain meds. I remember reading figures that ranged from 5% to 10%. When I did a quick search for substantiation I found that many of the research articles online are only available for a fee. The rates I did see varied so much, I must assume that the studies are not all using the same standards. Different researchers have different definitions of addiction vs. dependence; there is also an overlap of characteristics or symptoms between addicts and those who are physically dependent. If I had had no legal access to relief when I was in extremis after seven days of no methadone, I probably would have lied or stolen, if necessary to end the withdrawal. Nothing violent; I would have gotten myself somehow to the emergency room instead. But if turned away there, who knows?

This is the sort of mental and physical suffering that confronts the organism with a stark choice: solve this, or die. (If you are too debilitated to protect yourself or find food, you will die, as far as the primitive part of our brain is concerned.) Once physical dependency has been established, both addicts and pain patients are motivated to get their drugs, driven more powerfully than anyone can imagine who has not experienced it. The distinctions between addict and dependent patient must be made on criteria other than the evidence of physical dependence, since this is the same for both.

The chart below presents some criteria that seem to square with my experience and reading, although the source does not give scholarly or research citations for it.

[The last item under Addicts should read “The life of an addict is a continuous downward spiral.”]

Individual responses to potentially addictive drugs vary. Not everyone who tries heroin becomes addicted. Different responses are based on biological and psychological factors we are only beginning to glimpse: everything’s neurological in the end, I suppose, but increasingly it appears that experience (from conditions in utero to nutrition, upbringing, and exercise) can cause physical changes in the brain and nervous system, and therefore in thinking, emotion, and behavior [see note 1]. Even the physical brain, where our sense of “I” resides, is changeable throughout our lives: adapting, adding complexity, growing (or shrinking) based on what happens to us. The activity of our genes themselves can be enhanced, reduced, suppressed entirely, depending on outside conditions from before birth to the day we die.

How should society regard people with chronic pain?

When a starving person steals bread, we do not say that he should have simply endured his hunger, or that he is “addicted” to food. Believe me, the situation of a person in great pain, or even moderate chronic pain, is also desperate and unbearable, and the organism will get relief.

The compassionate and socially responsible action is to meet these needs in an appropriate way. Can we assist this starving person in earning money so as to feed himself or herself? If not, most of us agree that the helpless, the elderly, the people so injured by life as to be unemployable, should receive aid rather than be allowed to starve or freeze to death. The pain patient deserves the same action: the question to be asked is: How can the pain best be alleviated? There may be surgical options, transfer to a different job, physical therapy, use of TENS units and the like, as appropriate. Meditation, mild exercise, and cognitive training may offer some relief too. But the response to pain must not be limited to only non-drug approaches.

The patient is the final judge of what works, and how much pain is too much, and the patient should not be silenced with threats and accusations of addiction.

A question that needs to be asked about drug addiction is Why? Why do so many of our fellow citizens seek out heroin, cocaine, methamphetamine, illegal prescription drugs, too much alcohol? What is their pain? Not physical, perhaps, but certainly psychological or spiritual: despair, lack of meaning in life, lack of true positive connexion to other human beings and to the natural world. Until we approach drug addiction in this way we will never understand how to reduce its occurrence. Neither after-the-fact tactics (punishment, ostracism, rehab), nor prevention (education and interdiction) have worked very well. But asking Why? about addiction would reveal aspects of our society that are senseless and cruel to many, but pleasant and profitable for a few. Danger, ssssshh!

We have been so cowed and brainwashed by the continually failing War on Drugs and our native streak of puritanism that we even permit medical professionals to deny adequate pain relief to terminal cancer patients. Is it really because they “might get addicted” in the weeks before they die? Or is it the imposition of society’s fears and prejudices upon the most helpless among us? Clearly, we have made little progress in reducing the numbers of illegal drug users over the past forty years––but law-abiding people who go to doctors, they can be denied and controlled.

And so, apparently, can Dr. Gregory House, who is pitched to us as the independent thinker extraordinaire, smart and brave, ready to track truth to its lair and drag it out into the daylight. I wish his writers would let him do exactly that on the issue of pain and addiction.

1. Further reading on the “plasticity” of the brain (an unsystematic quick gathering)

• Scientists map maturation of the human brain (2003), a short overview
• Brain changes significantly after age 18 (2006), “The brain of an 18-year-old college freshman is still far from resembling the brain of someone in their mid-twenties. When do we reach adulthood? It might be much later than we traditionally think.”
• Research finding persistent physical and functional changes in human brains caused by smoking, chemotherapy,
• Empirical research on structural brain changes affecting social cognitive development after childhood (2007);
• Various environmental factors can cause “epigenetic changes…reversible heritable changes in the functioning of a gene can occur without any alterations to the DNA sequence. These changes may be induced spontaneously, in response to environmental factors…” and be associated with development of schizophrenia and other psychiatric disorders or the quality of an individual’s performance as a parent
• Childhood lead exposure can predict criminality(2008), even after controlling for factors such as socioeconomic status of the family; “Lead can interfere with the brain by impairing synapse formation and disrupting neurotransmitters, such as dopamine and serotonin. It also appears to permanently alter brain structure.”





Whales too polluted to be eaten by Faroe Islanders

You’d think living in the Faroe Islands, rainy chunks of basalt about midway between Norway and Iceland, would keep you out of the way of serious industrial pollution. We all know better these days, of course, but still: such a remote location!

New Scientist reports (28 November 2008) that the medical officers on the Faroe Islands have recommended an end to the consumption of whale meat from the thousands of pilot whales killed each year by islanders. It’s a traditional food which has kept off starvation in the past, but now the whales contain dangerous levels of mercury, PCBs, and DDT derivatives.

Tests on the people themselves have revealed “damage to fetal neural development, high blood pressure, and impaired immunity in children, as well as increased rates of Parkinson’s disease, circulatory problems and possibly infertility in adults.”

Mercury appears to be the pollutant causing the worst health problems, and the Faroese studies increase concerns about the risks of low levels of mercury in other populations.

Above, Church on the Faroe Islands. Photo source.

Below, a settlement on one of the 18 small islands. “Faroe” means “sheep”; early settlers brought sheep and oats to the islands, which are also home to many seabirds including puffins. Photo source.