PainOnline.com

What constitutes model CP behavior for rehab specialists? Astonishingly, for some, it is the Knight of the Holy Grail.

Wow, we thought the old notion of malingering in CP was dead and gone; but, apparently there are some doctors willing to resurrect this old, debunked, narrow minded view.

It seemed obvious with Carl Saab’s finding of MRI signal in the vermis, that CP patients were not like others. Their brains were misbehaving, specifically, the parts having to do with pain.

Saab’s blockbuster paper at the Ninth World Congress of Pain caused such a violent reaction among the “I know malingering when I see it” crowd that they were furious with the president of the IASP, Dr. Patrick Wall, for bowing to the young researcher and announcing that Saab’s work was so revolutionary, that the pain anatomists would have to “start over from scratch”.

This caused a storm in the pain world which had not quieted at the time of Wall’s death. Many of his supporters had turned away from him. He was accused of trying to “just make a splash”. What did Wall do to turn him from the respected world leader in pain, into someone who was being deserted by his own friends. (Of course, the majority of doctors supported Wall, but some pretty impressive minds broke loose and bolted.)

What Wall did was hand to a young, insignificant scientist, the greatest compliment he had ever paid to a researcher. “Good for you. You proved us wrong.” Anyone who knows Wall knows that such a compliment was hard to get from him. Pat had this marvelous way of responding to papers with the precision of a scalpel wielding surgeon, a gentleman’s way of graciously taking apart many a carefully laid presentation. He knew all the old discoveries, and he insisted the new discoveries have a fit.

Even the bold and sure would find they stood on sand, as Wall dissected the presentations, bit by polite bit. So what did Saab do to gain Wall’s respect. It was unheard of. This great man yielding to someone who sat on no editorial boards and had not yet earned a PhD, who could offer Wall nothing in return for his endorsement. What Saab had done was to prove with functional MRI that in CP rats the midline nuclei of the cerebellum, the vermis, was involved in pain inhibition.

Although scientists had been tinkering with the motor cortex for years and getting some surprising incidents of pain inhibition with stimulation of the motor cortex at the prefrontal gyrus, absolutely NO ONE suspected that a motor control structure like the cerebellum was involved in pain suppression. This forced rethinking of the whole wiring of pain. The MOTOR cortex studies which have followed have pretty much remade the whole framework of thought on how pain behaves in the brain.

It used to be simple, Pain pertained only to the SENSORY cortex. All pain was pretty much the same. Therefore, the advice given to patients was transportable from one condition to the other, and in some minds, the medical treatments were identical as well. If the treatment placed all blame of failure on the patient, this was a pretty good cover for not actually having much to offer. It made the doctor feel secure, although it was a terrible era for the severe CP patient. Saab blew the door off its hinges, and nothing has been the same since.

It is hard at the end of your years to see a lifetime of hard work discounted by the very people whom you represent, but for some, Wall had gone too far against the sacred cows of pain medicine. The brittle minds snapped, and a schism appeared in the pain community.

For years, the psychologists had said pain was all in the mind, and what most people needed was a better attitude. Invariably the story of some soldier shot in war who felt no pain was told and retold until people cut in half hardly noticed it. An urban myth has evolved. Of course, most of this was uncorroborated, and most who told it had never been in uniform. The painless soldier is the exception, not the rule, and the same is true for any bad injury. Even those insulated from pain by shock or excitement certainly feel it strongly enough with a little time. For CP, a llfelong illness, stories about 30 minutes of pain free injury were not helpful. How could the CP patient duplicate that act for a lifetime when the injured soldiers on which the whole idea was footed, could not.

In the movie, “Saving Private Ryan” the viewer personally wants to shut up the blubbering, screaming soldier who has been wounded, until two or three syrettes of morphine are FINALLY jammed into his leg. It is about time. WAIT A MINUTE! What happened to all the stylized recitations about soldiers hit in wartime suffering no pain, proving once and for all, pain is psychological. There is an obvious conflict between the urban myth and “Saving Private Ryan”.

So embedded is this folklore that surveys show the average citizen tends to view chronic pain as a “weakness” rather than as a “misfortune”. We adopt both views simultaneously without careful review, with the consequence that we accept an urban myth in pain treatment, when there is a part of us that knows an actual, specific effective treatment is needed.

Alternatively, other heroic movie scenes do not tax us with the screams of the wounded, but rather show determined, painless soldiers shrugging off multiple wounds, any one of which would stop a Cape Buffalo, which do not deter the actors in the least, allowing them to hurl the grenade over the ridge, oblivious to their ghastly wounds, until they finally drop dead. Sheer grit has overcome the 50 caliber rounds penetrating their bodies. In real life, the story runs a little different.

These two myths, both false, although so popular Hollywood may play both of them with equal acceptance by the audience, are diametrically opposed. One or both of these views is exaggerated. It is time for a reality check and reveiw of the real facts. Shock can destroy the memory of pain, but living through it continually is a very traumatic event and pain stays hidden for a very short time. The bulletproof soldier is also folklore. We want to be treated with medicine, not folklore, and it isn’t medicine until a double blind study demonstrates that it works. That is the standard the FDA insists on, and we would appreciate the same when being treated as CP patients. Shock draws blood from the brain, shutting down systems, perhaps even pain recognition systems; but this situation cannot endure indefinitely; whereas Central Pain does.

When PFC Jessica Lynch was injured in Iraq, it is reported she could not even remember the first day or so. On the other hand, we receive reports of heavy sedation with opiates on the airplane necessary for the ride to Germany to control her severe pain. Pvt. Lynch would have been in for a tough time if she had contracted Central Pain for thirty or forty years. She was supposed to be the quintessential example of the soldier who felt no pain. It thus appears that the time period for that kind of pain relief expires rather quickly. For the uninformed, when pain goes on and on, the mind does not reward you with a volume discount. The pain seems stronger as time goes by. The accumulation of day, weeks, and years of unending pain draws interest on the account, and you will be more diminished after ten years than you were after one year. Buytendijk says the interest rate exacted by pain is “usurious”. For some, it is more than they can pay.

If certain pain clinics’ view of appropriate treatment of pain held true, instead of opiates, we should have been scheduling repeated appearances by soldiers dressed in Republican Guard dress to keep Jessica in shock, so her pain would have been amnesic, relief would have been total, and she also would have escaped the risks and side effects of opiates (constipation, increased intracranial pressure, shameful ADDICTION, etc.)

This sort of unrealistic treatment of pain is ineffective of course, and anyone who believes it has ANY application to chronic pain, or should be applied to CP patients, has not stopped to think. You cannot base a therapy on a war story. Chances are, such a caregive has never actually been wounded in war, and those who have, may actually lean in the direction that pain hurts, rather than that it disappears with the proper attitude. What does shock have to do with proper attitude. If you are in shock, the only attitude possible is “shock attitude”.

J. Douglas Bremer, a neuroradiologist, has pointed out the prevention of brain injury by shock is not entirely successful, severe shock leaving what appears to be persistent damage in the brain. There is a hint that an episode of severe pain, especially to a child, guarantees the person will never be the same. This is the opposite of pain coming from the mind, it is an example of pain going INTO the mind.

And so pardon us for questioning the pain clinics who remind us of drill sergeants. Some have recommended that the patient, as long as they can stand it, resume some task, like driving, until the pain finally does them in again. and they can no longer manage it. This may have application to some pain conditions, but it cannot be the answer in CP. For them, it is not pain management. It is working the cycle of pain (some bad days and some good days) to claim a victory over pain which is clearly a premature announcement.

Will those who believe in the painless soldier please stand up. Hmm, the group standing appears to be made up almost entirely of those who were never wounded. Perhaps advocates and tellers of the bulletproof soldier story volunteer for a demonstration by offering themselves up for a high caliber assault weapon to be fired at them in a nonlethal area. If they cannot do this, perhaps they should acknowledge pain is painful and set about to research blockers of neurotransmitters instead of feeding us old wives tales and hand-me-down war stories. The only wounded soldier I have known well said it “hurt like a mother” right from the start. So did the next four full metal jacket bullets that caught him, right through the 3 foot tree he was hiding behind.

How far do some of the clinics go? Pretty far. Those around the patient are said to be “reinforcing” the pain by any attention they give. Response to pain on the part of the patient is said to be “pain behavior”, something akin to adolescent behavior, acting out behavior, or frankly, misbehavior. Basically, as applied to CP, we cannot agree.

Why can they not see that the CP patient is simply RESPONDING to the pain, and trying to survive. Yet, defensive action, or a sagging spirit of any kind is suspect, no matter how justified. As to the severe patients, they are ALREADY using mind power to control pain, just to get to the clinic.

Notably, the discovery of aberrations in the brain in the face of CP, has now forced a rethinking of the matter. If Saab was right, then a lot of other people were wrong. Detractors immediately set about to discredit Saab, but the opposite result followed. His work was reproduced and corroborated. Saab and Wall were correct. CP WAS different. Central nerve injury pain was DIFFERENT from ordinary pain. At that fork in the road, the clinicians and the PhD’s parted ways. Clinicians dug in, and the PhD’s couldn’t have cared less, ignoring them.

Some clinicians held to the old time religion, but the PhD’s went ahead with the premise that alterations in brain chemistry would be found to match the fMRI findings. In rapid succession came Clifford Woolf’s remarkable work, wherein he identified the kinase which attached high energy bonds to NMDA, activating long acting pain. This kinase, MAPK, made inert NMDA into active NMDA, which was clearly in the mix that was going wrong in Central Pain. About the same time, the precursors to excitation were found in the ERK1/ERK2 cascade. Genes were found to have lost control and to have become factories of pain exciters, which were pouring out the pain neurotransmitters inappropriately.

“What about inhibition of pain?”, the scientists wondered. Was it involved also in CP, or was it merely a problem of overexcitation and sensitization of the pain receptors. Significantly, these questions appear to have been answered in the last two months. First came Coull’s work, reviewed elsewhere at Painonline, which showed that injured neurons in CP fail to produce the chloride ion carrying molecule, converting inhibition into excitation (chloride helping to prime the nerve for firing).

Then, on October 1st in the Journal of Neuroscience, Bryan Hains, along with Saab and other colleagues at Yale, found the mother lode. Immunofluoresence revealed that a particular sodium ion channel (channels are multi-angled tubes which carry ions across the cell membrane to permit firing of the neuron), a channel sensitive to voltage change, (ie. it opens and closes according to the voltage present) the NAv 1.3 channel, was wildly overproduced in nerve cells in rats with CP.

This was the smoking gun, proving once and for all, CP patients were not weak, they were injured. The upregulation in pain chemistry was clear and unequivocal. We now knew that CP patients were getting it from both directions. EXCITATION was way UP, and INHIBITION was way DOWN. The injured nerve cell exploded in its firing rate, due to upregulation of the Nav 1.3 channels, while at the same time, abnormalities in chloride transport converted inhibition mechanisms, which would normally suppress pain, into double agents which had gone over to the enemy, PAIN. Hence, whatever mental state might suppress pain, the stiff upper lip, would have a rough go of it, if the chemical pathways effecting inhibition had been perverted into engines of pain. We do not know why injury to a neuron would UPregulate Nav 1.3’s and at the same time DOWNregulate FCC.

How are the clinicians handling all this radical new stuff by the PhD’s, ie. the benchtop researchers? Not very well. The blind eye has been turned in many instances. These findings are about as welcome as a skunk in an elevator since many pain clinics have been founding their treatments on spartan ideas, linked to the “stiff upper lip” doctrine. It never worked, but the promise of relief of CP drove many to try anything for some pain relief. The new findings knocked the old regimentation, discipline, and “stop coddling the pain patient” advocates out of the limelight. In fact, it threatened to discredit them entirely.

Some began to refer to the old techniques as “neo-Kellogg” or “Kellogg warmed over” (after the eccentric millionaire who used stern, spartan, methods at his clinic, to treat illness, near the turn of the century). This was not exactly a compliment and relegated traditional M.D. treatment to something like alternative medicine.

Have the “chastise the patient” crowd changed their minds to any degree to reflect the new science? In some cases, not at all. “Be darned if we give up what has carried us this far”. Some have even extended their fullout attack on “pain behavior” to the spouse, blaming slow recovery on helpful, attentive spouses. They are the “reward police”, seeing a reinforcement for the pain in some very harmless activity.

What is there about Nav1.3 and decreased KCC2 (the choride transporter) that they don’t understand. These chemical changes are not imaginary, just because the molecules involved are small, relative to what can be seen with the naked eye. Certain cone shells can kill a person with less toxin than the CP patient herself is manufacturing. (Those Hains pictures are VERY impressive).

And so, here we are, in 2003. blessed with some of the brightest minds who have ever ventured upon the Pain playing field, making marvelous discoveries. Yet, at the same time, a conservative, diehard element in the clinical world refuses to accept that the rules have changed. If you don’t know the neurochemistry, you don’t know much, and that is the short of it. Sorry about that obsolete psychology. It isn’t psychological, it is biochemical and genetic.

It is discouraging to watch the old guard become ever more entrenched in their obsolete views of CP. They imagine that no matter WHAT is going in the patient, all that is needed is to “keep on keeping on”. They may be a “pain clinic”, but are they a “pain RELIEF clinic”?

The comic scene of the knight in “Monty Python and the Holy Grail”, who carries on the battle and seriously thinks everything is still possible despite losing all his extremities is pretty much how some of the old thinking clinicians view CP. No matter what you lose, just don’t give up. The severe CP patient is hardly alive, and wishes he were not, but if the militaristic pain docs see them, they will see something like a malingerer, no matter how powerful the pain neurotransmitters are known to be.

The only remedy for such a philosophy, which some have practically made into a religion, is education. Education in neurochemistry.

No, you don’t have to keep going like the knight of the Holy Grail. It is okay for your family and spouse to be supportive. It will not prolong your illness because you will have it for the duration of time it takes to fund research to find blockers for neurotransmitters, no matter what your spouse does to help you. Actually, lowered expectations, not some regimen of exhausting and depleting attempts to do what you cannot, are the best hope for survival. In the meantime, thanks are due to the PhD’s who could care less what the clinicians think. But how did we get to this point?

Probably, it is something like the idea that “to a child with a hammer, everything looks like a nail”. To a pain clinic with a “method” or special “approach”, everything seems to fit. They often cannot distinguish the person dying from agony from the patient with low back pain. They even group these people together in studies, as if such a thing made sense in evaluating uniform therapies.

The ones who do not fit are in danger of being found uncooperative or self-indulgent, rather than the treatment being modified to fit the patient. We hope the new era is soon wholly embraced, as the old one did not have that much to recommend it. Even the low back pain patient deserves a break. As for the severe CP, the fool who rushes to reproach them treds where the angels have the sense to avoid. It is a brave new world of neurotransmitters out there. Everyone had better get with the program. The tide is turning. You don’t want to get left behind with Mr. Kellogg.