This article got thrashed in the last WordPress update. Correcting and reposting it have been added to the high-priority list… which is only a month long. // ed. 12/2015
The value of valid reporting in medicine is so fundamental there’s no question about it when the issue is explicity raised. Unfortunately, it’s implicitly absent in too many aspects of CRPS care.
The inspiration for this article came from paperwork requiring me to rate my pain on the standard 1-10 scale. This is so irrelevant to life now that it’s simply not approachable.
Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.
What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.
Read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…
Step 1: Acute CRPS, with otherwise normal responses
My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal — apart from the fact that it didn’t know when to stop:
|Mental impact||Physical changes|
|No pain at all.||No change.|
|Hurts when I stop and look for it.||No change.|
|Neither looking for it nor distracted.||No significant change.|
|Noticeable when concentrating on something else.||Mild nausea, mild headache, crave comfort food.|
|Interferes with concentration.||Drop things, grip unreliable. Nausea, headache, appetite loss.|
|Difficult to think about anything else.||Trouble picking things up.|
|Makes concentration impossible. Forget names.||Interferes with breathing pattern. No grip.|
|Can’t think, can’t speak, can’t draw full breath, tears start – or any 3 of these 4.|
|Unrated even numbers indicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number. Note that weakness is only loosely related to pain. I drop things and have trouble picking things up at times when I have little or no pain. However, as pain worsens, physical function consistently deteriorates.|
Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one pragmatic:
– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.
– Pragmatically, in the US, health care is funded by a complex system of insurance companies. Insurance companies are profit-driven entities who are motivated not to pay. One upshot is, they don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because THESE numbers are tied to explicit levels of function.
Step 2: Early chronic CRPS, with altered responses
My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in appearance and ability:
|Mental impact||Physical changes|
|Noticeable when concentrating on something else. Trouble with new names/faces.||Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist). Mild hyperesthesia.|
|Interferes with concentration. Short-term memory problems. Hard to retain new info.||Mild nausea. Grip unreliable. Hyperesthesia pronounced; breeze feels like hot iron. Color changes noticeable.|
|Absent-minded. White haze in vision. Hard to build on known info. Can follow ~4 steps. May forget known names.||Nausea, headache, appetite loss. Drop things. Cold to touch, often clammy. Arms & palms hurt more to touch.|
|Terrible focus. Behavior off-key. Can’t follow step 1 without prompting. Random long-term memory gaps. Forget friends’ names.||Can’t pick things up; use two hands for glass/bottle of water. Arms & hands hurt significantly.|
|Speech slows. Concentration impossible. Hard to perceive and respond to outer world.||Interferes with breathing pattern. No grip. Everything hurts. Swollen extremities.|
|Can’t think, can’t speak, can’t stand upright, can’t draw full breath, tears start – or any 3 of these 4.|
Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.
Clinical note: tracking functional impairments is key to getting compensated for delivering appropriate care.
Step 3: Established chronic CRPS
And my third scale changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:
|Mental impact||Physical changes|
|Neither looking for it nor distracted. Forget new names & faces instantly.||Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.|
|Interferes with concentration. Anxiety levels rise. Lousy S-T memory. Can’t follow directions past step 4. May forget known names.||Nausea, headache, appetite loss. Grip unreliable. Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg. Limbs and back hurt more to touch.|
|Absent-minded. White haze in vision. Can’t build on existing info. Can follow 1 step, maybe 2. May forget friends’ names. Random L-T memory gaps. Irritable.||Drop things. Knees buckle on steps or uphill. Cold to touch, often clammy. L foot, B toes, are dark. Limbs and back hurt badly.|
|Speech slows. No focus. Behavior off-key. Can’t follow step 1 without prompting.||Can’t pick things up; use two hands for glass/bottle of water. No stairs.|
|Makes concentration impossible. Hard to perceive and respond to outer world.||Interferes with breathing pattern. No grip. No standing. Everything hurts. Swollen extremities, sometimes face.|
|Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start – or any 3 of these 4.|
Note how the actual value of each number changes over time. This highlights one of the most persistent problems with the 1-10 scale: its variability, not only from person to person, but from time to time.
At one point, 5/10 meant "Noticeable when concentrating on something else. / Mild nausea, mild headache, crave comfort food." Two years along, 5/10 meant "Interferes with concentration. Short-term memory problems. Hard to retain new info. / Mild nausea. Grip unreliable. Hyperesthesia pronounced; breeze feels like hot iron. Color changes noticeable."
Those are two completely different statements — but the number is the same! The value of each number on the 1-10 scale is essentially nil unless it has a description of what that number means at that point in time.
The usual justification for using the 1-10 scale is that it provides a point of comparison, letting clinicians know if the medication given has helped, and if so, how much. This is of tightly limited use, because it addresses pain alone without addressing function, and there is no pain medication on the market that does not have the potential to affect function. Even medicating pain effectively can leave the patient with function impaired, and that’s rarely well-addressed.
The CRPS Grading Scale
This case has evolved considerably in the past year. The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 7 or a 10? Does it matter?
I need to avoid thinking about depressing things like my pain and my disability, because I must function as well as possible, every minute of every day. I focus relentlessly on coping with these issues and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.
The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope, think, and interact in spite of it. Therefore, this rating scale remains meaningful, because it describes my functional experience of life.
|A. Coping gracefully (baseline)|
|Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly, affect lively and engaged.||Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.||B. Coping roughly|
|Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable.||Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.|
|C. Barely coping|
|Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.||Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.|
|Unable to process interactions with others, suicidal ideation.||Unable either to rest or be active. No position is bearable for long.|
|Product||Label||Procured in||Antiox. (mmol/100g)||Prep|
|Blackberries, cultivated||Solabaer, Sola, Norway||Norway||4.13||3|
|Blackberries, cultivated, canned, drained||S&W Fine Food, USA||Norway||2.34||3|
|Blackberries, cultivated, frozen||Local grocery||USA||4.06||6|
|Blackberries, cultivated, frozen||Wholesaler||USA||3.89||6|
|Blackberries, cultivated, with sugar||Findus, Norway||Norway||4.76||3|
|Blackberries, Dessert Berries, without sugar, frozen||Norske Dessertbaer, Norway (berries from Poland)||Norway||5.98||3|
|Blackberries, dried, “Loch Ness”||The Norwegian Crop Institute||Norway||37.08||5|
3 Purchased in grocery store, restaurant, cafe, bakery or marketplace.
4 Handpicked or received directly from supplier.
5 Previously published in Halvorsen et al. 2002 or Dragland et al. 2003
6 Previously published in Halvorsen et al. 2006.
Notice how much variation there is?
This table indicates what’s behind those eternally confusing reports about which food has the most antioxidant activity.
With a spread of more than tenfold in the antioxidant activity in blackberries, you simply have to look at two more factors:
It’s a reminder of something we know, but tend to forget in the barrage of information and anxiety around food.
- Plants and animals need nutrients, water, sunshine and air to grow; the quality and quantity of these things affects what they produce.
More species-appropriate and healthful growing environments produce more nutritious food than inappropriate or unhealthful environments.
Different strains of the same species have different attributes, as someone who has tasted longhorn steak and kobe steak side-by-side could probably tell you.
- Food nutrients are reactive, which means that heat and light are going to make them change over time.
If they weren’t reactive, they wouldn’t be nutrients, because nutrients need to be amenable to digestion and assimilation — that is, physical and chemical reactions — before they can do us any good.
Therefore, food nutrients are susceptible to heat, light and time.
Cultivated blackberries from 3 different places had an antioxidant score that varied by roughly a third. That’s a significant variation!
There was only one sample of wild berries, which rated about the same as the best of the cultivated fresh berries from the same region. Wild strains of berries are generally more nutritious, so it should be said that this study does not specify if these berries were from a wild strain, or from a cultivated strain found growing in the wild. Not everyone realizes there’s a difference, but heredity matters (kobe/longhorn.)
Processing makes a huge difference in the amount of nutrition available per, say, 100 grams.
Notice how the canned berries, which are subjected to considerable heat in the canning process, have the least antioxidants.
The frozen berries, which are meant to last awhile (thus being subject to time) have less bounce per ounce than some, but more than the canned berries.
The fresh Norwegian berries that travelled to Belgium are likewise impoverished, and the distinguishing factor between them and the Norwegian berries in Norway is the transit… time.
This may also be due to using a strain of blackberry that withstands transport better — a trait which, in produce, often goes with a lower nutritional profile.
If fruit is dried correctly (a big “if”), then it retains much of its nutritional value and has the considerable advantage of concentrating it into a smaller quantity. Thus, the 100gm of dried, possibly higher-quality berries turned out to have the biggest antioxidant kick — by a factor of roughly 10 over frozen berries.
I’ve been thinking about this article since I read it a month ago.
Then, as I was struggling with brain fog this weekend, I got a pair of half-pints of organic raspberries from a large commercial producer which is famous for consistently mild, sweet-smelling berries that hold their shape despite being shipped all over. They were on sale.
I ate a whole package, hoping for that antioxidant kick that would chase some of the fog away. Not wanting too much sugar in my system (and hating to spend that much money in one sitting), I hesitated before starting on the second package, but no good. I might as well have been eating cardboard for all the good it did. I began to wonder if I should bother with raspberries at all, given how every bite I eat has to matter.
The next day, I stopped at a roadside stand and picked up a single half-pint of organic raspberries from a farmstand, for slightly more than the brand-name berries cost on sale, but less than they cost otherwise. (Farmstands are generally worth the gas I spend on finding and mapping them.) They were much smaller, much darker, and some of them were squashed. They wound up spilling in the car, and I pulled over to scoop them up and keep them from messing up the rest of my shopping. I quickly gave up on extracting them neatly, and just shoved the spilled half into my mouth.
Quite apart from the flavor explosion — which was an eye-opener in itself — within a minute, the fog had lifted. My eyes were sharper and my head was clearer than it had been in awhile. THAT was the antioxidant kick. It lasted for hours, and I got another one when I ate the second half.
Summary and context
A lot of the fuss over what to eat can be resolved with a little common sense and remembering what you learned in grade school when you were sprouting beans in little cups.
How fresh your food is, probably matters more than exactly what it is.
How well it was grown, probably matters more than the packaging.
And, if you’re lucky enough to live near farm country, roadside stands are worth your time.
If not, build farmer’s markets into your schedule, because they bring the fresh food right to your neighborhood, with very little time between the soil and you.
I’ve found that each bite of more nutritious food is more rewarding in every sense, and I wind up needing less to meet my needs. It’s economical in the long run, although I remember it took a few months of eating good food voraciously to catch my impoverished system up. That cost a lot up front, but it paid off in the end: my system became more efficient and my tastes evolved for satiation, not overstimulation. I eat enough and am genuinely pleased; that eternal nervous quest for more-more-more is gone.
Grocery stores are for filling in after the farmer’s market and roadside stands, in my view. I have a limited budget and stringent nutritional needs, so I’ve come to that realization the hard way. This study just reinforces my discovery in a different way.
The up-side is, it brings more attention to this national shame: “..while only 1% of Americans serve in the military, the suicide rate of veterans accounts for [20 %] of the overall total in the US.” [Emphasis mine.] They’re overrepresented in suicidal despair, even at this time of epic national meltdown, at a rate of 19:1.
There are some good ideas (badly put) under this deceptive title (new? Hardly), with an unfortunate insularity and gee-whizz ignorance in parts: “the effects on the mental health of active-duty service members, reservists, and veterans is only just beginning to be felt.”
Only just beginning to be felt? By whom? Reports started streaming out of this population from the start!
The horrific rate of PTSD, brain injury and subsequent/consequent suicide among modern veterans has been in the news nearly since the Iraq war started. And the effects were “felt” by affected veterans and those who love them from the beginning.
That was an astoundingly insensitive choice of words, and when a social scientist is astoundingly insensitive, it automatically makes me question his insight and judgement. After all, social scientists have to pay attention to social cues and have some social awareness in order to do their jobs well.
The suggestions made by this article are,
- Reduce access to guns and other means of suicide.
- Watch for sleep disturbances.
- Prescribe opioid medications carefully and monitor.
- Improve primary care treatment for depression.
These instructions are useful and appropriate (though not new at all), but the order puts the primary burden in the wrong place.
The reflex is to consider first how to change the patient’s context and control, and second how to change the provider’s context and control.
But which person — doctor or patient — do the policy makers have more access to?
Which has broader (and more cost-effective) reach per person?
Where does influence and support really come from — especially when the patients themselves are desperate and don’t have the resources to face what they’re dealing with?
Hint: Only one of these two people is licensed, monitored — and paid to show up.
It might be time to focus first on how to change the provider’s context and control — in this case, train primary care physicians in how to evaluate for mental health issues without losing their own minds, and make it easier for them to be more mindful, conscientious and appropriate when prescribing CNS depressants such as opioids.
Policies regarding these things may need to be updated. Despite some alterations and improvements, they still focus on controlling the patient’s access to meds and autonomy, rather than on changing the provider’s involvement and awareness of what’s going on.
This is exactly back-to-front.
|This is the best we can do??|
At-risk patients — those with PTSD, intrusive pain, or some other confounding factor — need to be seen more often and have mental health screens at each visit. Since many of the well-tested screening tools are short checkbox quizzes, that’s a reasonable addition to care. Some can be filled out in the lobby by the patient.
This serves several purposes: the frequent care provides a disproportionate feeling of support to the patients, reducing despair and helplessness; if the visits feel excessive, it motivates the patients to improve their own resources and self-care, reducing passivity, which improves outcomes; and bad findings on the quizzes provide quantifiable, documented need for mental health care, which can then be provided in a more timely manner and with less argument from payors.
Speaking as someone with significant confounding factors (chronic pain, neuro dysregulation, and acute life stress) I’d be delighted to know my doctor and health care system would do that for me, even though I’m not remotely suicidal myself.
When the behavior of those who are easiest for policies to reach AND most influential in patient care is more appropriate and effective, then it makes more sense to go to the trouble and expense to reach further out into the population’s private lives and try to manage them there.
A more rational and effective approach might be,
- Train and retrain all primary care doctors to look for mental health issues. This is something that suicide prevention specialists have been screaming for for years. It’s mentioned last in this article, but should be mentioned first: people who commit suicide were likely to have seen their doctors within a month. Talk about a cry for help falling on deaf ears!
But most doctors turn into deer in the headlights in the face of mental distress, because they have no real idea about what to do. There need to be better guidelines, a clearer path to mental health follow-up, and failure to meet basic requirements of care needs to create problems for the provider — as they inevitably do for the patient.
- Manage access to obvious methods of suicide, like CNS depressants and firearms. There are many profoundly depressed people who will kill themselves if it’s easy, but fewer who will really put a lot of energy into it, because energy plummets with major depression — along with impulse control. A deadly combination.
Reducing access involves having primary doctors get more involved with patients who get CNS depressants like opioids and benzodiazepines; implementing and enforcing access laws to firearms and ammunition; and noticing at-risk people with drug and firearm access and giving them the training they need to reduce their own access on an impulsive basis. (Yes,that’s right, engage the patient’s own inner and outer resources, rather than simply impose limits outside their control.)
- Increase time span between impulse and action, giving second thoughts a chance to kick in. This is important, because the despair is stubborn, but the suicidal impulse comes and goes. Give it a chance to go, so the person has a future and a chance to recover.
This involves, again, noticing them; engaging them to leverage their own capacity for self-management; and getting logistical support from those around them.
- Look for early signs, like sleep disturbance, mood swings and eating or weight disturbances. Don’t know why the latter signs aren’t even mentioned here, when they’re easier to notice from the outside. Veterans certainly have them.
We’ve been pushing for effective education for all primary doctors around both mental health and pain control (which are tightly linked) for decades. It’s not new, it’s just ignored, underfunded, and badly implemented, costing billions in direct and indirect costs.
Mental health and pain control are tightly linked because:
- Pain is depressing.
- Pain is limiting.
- The helplessness of those limitations is depressing.
- CNS depressants are, literally, depressing.
- Depression and helplessness significantly increase pain response in the brain and nerves.
- And back around we go.
It’s a vicious cycle, keeping overtaxed minds between frying pan and fire…
Lasting treatment success is tied to increasing someone’s sense of self-governance and engagement with life (reducing actual helplessness) not limiting their options and patronizing them into submission (increasing actual helplessness.)
[Limiting options is necessary and useful for inpatient treatment, but is highly problematic in outpatient care — which is where most mental health issues take place.]
That same engagement and sense of self-governance also reduces the neural system’s susceptibility to pain.
It breaks the cycle.
|One of these people is not engaged in life. The other is. Which seems better?|
Let’s do all that now — at last — and see how much faster the suicide rates drop than at any prior point in history. For veterans, civilians, everyone.
It’d be cheap, effective, and useful. It’d serve our veterans and increase productivity. It’d brighten up the lives of everyone affected by it. Is there a downside?
Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide. ScienceDaily (Sep. 10, 2012)
6,500 US Military Veterans Commit Suicide Every Year, International Business Times (April 2012).
Combat duty in Iraq and Afghanistan, mental health problems, and barriers to care. NEJM (July 2004)
PubMed search for “PTSD veterans” results.
PubMed search for “TBI veterans” results. TBI stands for Traumatic Brain Injury.
Make the Connection, bringing generations of vets together for mutual support and counseling.
Suicides — United States, 1999–2007 Centers for Disease Control (January 2011).
Moreover, most specialists were drawn to their specialty because they thought it was the coolest and most intriguing use of their time and skills.
It’s helpful to realize that it doesn’t so much take brains to get through med school, as the ability to work really hard on your own behalf. Moderate intelligence is enough, if you can be a solid student. It’s just a lot of hard work, with a guaranteed career at the end of it. This might explain why so many docs are simply mediocre, and most of the time, that’s really all they have to be. The trick is knowing when that’s not enough.
No profession — in fact, no large human grouping — is exempt from the reality of the bell curve. And this means that, while a few physicians are truly outstanding, a few are truly vile; a few are famous, and a few are totally invisible; most are somewhere in the middle.
Almost all docs are honestly doing their best, and when they give up (which sounds like, “It’s all in your head” if they’re chicken, or “there’s nothing more I can do” if they’re not) or screw up (which sounds like, “whoops… it’s not my fault” if they’re chicken, or “I’m truly sorry, I’m still only human” if they’re not) it’s because the science, their imagination, or their intelligence is not always up to the challenge.
A very few are exceptionally smart, exceptionally diligent, and exceptionally good at communicating effectively with patients. They are at one tip of the bell curve, where miracles happen and people beat the odds.
A very few are exceptionally egocentric, have an exceptionally good act, and are exceptionally good at communicating with administrators (which is a special skill.) They are at the other tip of the bell curve, where others’ losses and suffering increase exponentially while the doc’s career blossoms in the adulation of those who don’t need them for care.
A few docs are so insulated from consequences and so accustomed to power that they become something distinct: they do more actual harm than anyone outside Congress or the judiciary can manage, and since they can’t be voted out, they need to be stopped some other way.
It’s rare, but, sadly, it happens to those hardest-pressed to stand up to them — and their obvious allies.
Those of us with rare and complex diseases are bound to hear of them, because rare and complex diseases are prone to develop “cults of personality” around physicians and institutions that get a good article written about them because the subject itself is cool.
These vile docs are a tiny, tiny minority, but they do exist, and sooner or later, we have to deal with them ourselves or aid our friends who do.
In a litigious country, it’s important to know what the agendas are. So let’s be clear about one thing, before going further with this article.
- Those of us with CRPS and related conditions are not vindictive, we are desperately in search of effective care.
- We typically exhaust all reasonable means of resolution, long after any normal person would have given up in frustration and despair.
- So, by the time WE are ready to trash a doctor or an institution, they have earned it — in spades.
The merely careless, ignorant or foolish are damaging, but still not worth our very limited time and energy.
When you really have to stop a doctor, you’ll know.
While I do believe in evil, I don’t think anyone is past saving… but in order to redeem themselves, some people have to lose what they hold most dear. They have to hit bottom.
In rare cases like this, where the lives of others are fodder for the cannon of someone’s willful and soulless arrogance, I have no trouble with that. Let ’em hit.
How does that happen?…
By them losing enough of what matters most to them, that they have to either change or fail. Bad doctors in rarefied positions have huge egos and huge paychecks, and in practical terms, that is what matters most to them.
Egos and paychecks are tied together by reputation.
If you’ve been a victim, you can help re-adjust their reputations to something more in line with reality. This could really aid their personal growth. (Nice way of putting it, eh? Still true.)
If you’ve discussed it online and you’ve kept your paperwork, you’ve done most of the work already. It just involves cleaning up what you wrote to your friends, adding a few links, and laying your hands on the documentation created and collected along the way. I’ll write more about that soon, but for now, you can start with what you can easily get.
So here are some ways to do the most good:
- Report the physician/s to the licensing board in your state.
You can’t do much about what happens after that, but it goes on record and makes that doctor’s/institution’s future screwups harder for them to do damage control on. And there WILL be future screwups.
- Review the physician or organization online.
These review sites get read by patients, doctors, and doctors’ staff, so patients are warned by your record of consistent stinkery and — bonus! — a really stinky review often gets back to the physician via other physicians, providing “reputation readjustment” among the very people they most value. It sounds cruel, but hitting them in the ego is second only to hitting them in the pocketbook in terms of the salutary effect you can have once constructive efforts have been exhausted.
- Submit letters to the editor in that doctor’s or institution’s area.
These are followed by the PR departments of hospitals, government agencies and universities (this means that university hospitals will have a double dose of PR departments.) Docs who make the institution look bad, cost money. Once they look like they’ll cost too much, they lose their jobs… And, at higher levels, find it very hard to get another one.
In the end, maybe it’s not about whether you can get what you needed in the first place. Sometimes, it’s about protecting others, your cohorts in need. There are a lot more of them than there are of either vile doctors or great ones, but at least let’s steer them away from the vile. You can save lives this way 🙂 …
…With surprisingly little effort, now that you know where to find all the links you need to get started.
How to report damaging and dangerous doctors
AMA FAQ on reporting physicians:
Don’t be intimidated by the prim, imperative language. You’ve probably done almost all of that already.
Contact info for physician licensing boards in all 50 states:
This is who has the authority to revoke a vile physician’s right to practice. A consistent record of vileness can’t be overlooked once it gets to this level.
How to review your providers online
This site is well known and widely used. Even though it’s generic, physicians themselves have told me they fear bad reviews here:
Doctor-specific review sites:
Reputable. You need to register.
Find the doctor, click “About This Provider”, look under “Patient Satisfaction,” and click “Fill Out a Survey About [doctor’s name]”.
Looks rudimentary, but it’s been picked up by several national news outlets. Also, it has the perfect URL for its mission, so it will grow.
Seems relatively new. Could be worth it, if it saves one more person.
Ideal for institutional-level stinkiness. You can set up a petition and this org will do most of the legwork to get others with relevant interests to sign it. This then gets mailed to the institution with aaaaaall those names on it. Also, if it’s a good story and the news folks are awake, it can hit national TV. Now THAT’s pressure!
Letters to the editor
– Guidelines for writing letters to the editor: http://www.pnhp.org/action/how-to-write-an-op-ed-and-letter-to-the-editor
Most important advice: keep it focused, human, and snappy. Cite relevant recent news (on the institution, the doctor, the disease, health care, etc.) so it feels like part of the larger reality (which it is.)
– Links to major news outlets’ Letters pages, with submission guidelines: http://www.ccmc.org/node/16179
– Or search “letters to the editor [your state or city]” for more relevant links.
These not only come back to the hospital administrators, but are followed by politicos. It’s a good way to make a big stink, especially given a good paper trail and a link to your petition. If you’re lucky, it could trigger some investigative journalism.
You can also research investigative journalists in your area, and pitch your story as an idea for a project. This is more time-consuming than the other options, and not all of us have that time or can make those contacts.
Not the last word
Once a reputation has been trashed, it’s very hard to recover… And sometimes that’s the only way to keep these hateful, [expletives deleted], predatory, self-serving, [more expletives, really vile ones, also deleted] from hurting others.
It would be helpful if more doctors stepped up to the plate and helped corral their own. It’s this damaging minority of trolls who stain the image of all doctors.
Any physicians who know of means to do that, it would be tremendous if you’d let us know… If only to assure us that some effort is being made. Even after roughly a decade as a nurse and another as a patient, I know of no mechanism that still lets you police your own — so if it exists, it’s awfully coy. It’s too easy to feel abandoned by the profession when we wind up in the hands of someone like this, and see the colleagues near them just shut up and knuckle under. If there were a wider pool of colleagues they had to answer to, it would help us to know that.
If you’re in the awful position of needing to use this info for yourself or a loved one, please comment and let us know how these methods work for you.
Best of luck. May all your future doctors be good, capable, and really know their jobs.
This is absolutely thrilling news. Open-heart surgery is one of the most inherently worrisome and fraught forms of surgery, with an unbelievably painful post-op recovery phase. Simply cracking the chest is a big deal, and anything they do after that might be tricky but it’s not nearly as shocking to the body.
Taking the chest-cracking out of heart surgery is the single biggest change we can make to safer, saner, faster-healing, less complicated heart surgeries. We WANT people to survive the experience intact, we really do!
Aortic valve issues are, as I recall from my ICU/Telemetry nursing, one of the more common heart issues; although it’s not often life-threatening, it is often life-limiting, because without that “aortic kick” that the heart gets from a good, solid snapping-closed of the aortic valve during a heartbeat, the pumping action just isn’t as good, and that has knock-on effects that can pile up over time.
Weak aortic valves can contribute to everything related to an impaired heartbeat, including blood pressure, vessel competence (think of congestive heart failure and tissue swelling/edema), and most obviously to cardiac hypertrophy, where an underpowered heart grows extra muscle to try to push blood around. What that really does is create more demand for blood from the heart itself, and push more blood back out the incompetent aorta!
Now that surgery can correct aortic valve issues without open-heart surgery, watch the medical news over the next 2-3 years: you’re going to see a lot more studies directly relating aortic valve problems to other conditions, like those mentioned above. Why now? Because, once a problem can be solved, physicians are much more willing to look at the problem directly.
Just like the rest of us. 🙂
It’s important to note that, for people with CRPS who have to avoid surgery as much as is compatible with life, and for those with dysautonomia for other reasons, this surgery is a game-changer. No longer do we have to choose between increasingly incompetent valves and a lifelong upsurge in agony, disruption, and dysregulation. Now, we can have a surgery that goes near two major nerve bundles but, if properly done, touches neither; solves the problem and gives us our hearts back; and lets us get on with making the best of our lives.Talk about a win/win!
This article describes a new finding which relates memory loss and cognitive dysfunction to a loss of glutamate receptors in the prefrontal cortex (PFC):
They state that this is why the PFC tends to falter in the face of repeated stress: the receptors for one of the key neurotransmitters become depopulated, leaving fewer sites to accept the glutamate and allow that part of the brain to do its job.
Cognitive impairment in the face of repeated or chronic stress is not a monolithic problem, though. Memory and decision-making are probably the most complex of brain tasks, and there are plenty of things that go wrong when memory and cognition fail.
Other factors include dopamine depletion, leaving less of that transmitter to carry messages back from the PFC, thereby making executive decisions harder to make and still harder to follow through on. (I wrote a previous post on dopamine and decision making. I’ll dig it up and link over.)
And then there’s the adrenaline overproduction and overuse that characterizes chronic and repeated stress, leading to disruption of the hypothalamic-pituitary-adrenal axis (the body’s entire signaling structure for body processes) which contributes to brain dysfunction in still more ways: by disrupting sleep, which disrupts memory formation and impedes logic; and by contributing to the rise of metabolic syndrome, creating less stable blood sugar — which, in the brain, adds considerable insult to injury: a hungry brain is a low-functioning brain.
Take your vacations. Simplify your life. Move your body around regularly. Meditate early and often. If you cherish your brain, you might as well let it work — and that means getting a half-Nelson on stress before it gets one on you.
The article on overuse of dopamine (on my Living Anyway blog): http://livinganyway.blogspot.com/2011/03/dopamine-poverty-and-pain-lighter-side.html
Another Biowizardry entry on neurotransmitters: http://biowizardry.blogspot.com/2011/08/scared-of-wrong-things-role-of-mao-in.html
I have problems with using the word “numeracy” to mean “numeric literacy”, but I can adapt. To me, the word “numeracy” means “of or relating to numbers”; therefore, to be numerate means to be of or relating to numbers, and that doesn’t make sense.
Numeric literacy (however you name it) results in better decisions. Those who are numerically literate are better able to understand information that’s represented by quantities and numbers, and not be confused by sloppy descriptions and poor representations. They have better outcomes in health care, work and other areas where decision-making really pays off.
“This has implications for how policy makers and others should communicate about the risks of medicines, earthquakes, climate change, and the stock market.”
Make your decisions emotionally if you must, but get the data first, so at least you can really see what you’re risking.
iPhone blood pressure monitors & trackers:
I’d like to design a mobile app for tracking and managing pain. Flareups and neurotoxic food sensitivities wouldn’t stand a chance. Touchscreens rock for radio buttons and simple data entry; just have to make it easy to pick what you need and dump it into a dashboard with different ways of viewing the data — historically, by symptom, by factor; graph, chart, etc.
Collecting and tracking your own data is key to surviving and thriving with a long-term condition. It is possible to make good use of gadgetry, though it’s not something I usually focus on.
Any of you developers want to write the backend?
Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.
She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.
She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.
But today, they are biting deep.
I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.
Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.
I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.
Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.
It means the studies need to be done. Period.
Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.
But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.
I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.
I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.
For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.
No more silence. It’s too much like consent or, worse, collusion.
I do not consent to the deaths of my friends.
With my eyes now open, I’ll no longer collude.
Let’s find a real way out.