Without Hope, the Soul Dies

“Physical pain is the greatest evil.”—Augustine.

So if Central Pain is not curable and in many cases of severe disease is overwhelmingly not responsive to medications, leading to lives of unimaginable suffering and difficulty, where is the hope?

This is a question many Central Pain sufferers find themselves asking more often than is really healthy. There is no good answer to this question any more than one can find an ultimate answer to any suffering in the world.

The existence of suffering has always caused difficult reflections. For the ancient Greeks, this problem loomed great. Their solution during the Hellenist era was the conclusion that suffering must be a product of the existence of matter. The next step was to postulate that the existence of matter was behind all evil. And so came the philosophy of emanation, that the Divine Being had emanated the Logos, who effected the creation and could associate with matter without being contaminated by it.

Life in those times must have been truly desperate to have evolved a philosophy which puzzled over evil and suffering. Yet, we find the same question on the lips of sufferers today. Why me? Where does this come from?

While all would agree that “suffering is deep doctrine”, it may be worth mentioning that if we convert medical problems to a theological discussion, research tends to stop. Dr. Patrick Wall, one of the founders of this site and part of the group behind it prior to his death, was very emphatic that we should keep theology out of the discussion of Central Pain, to avoid the negative hit on research which would follow. As in, “Ho hum. It is in God’s hands, so we may stop worrying about it.” NOT the kind of religious thinking which is helpful, at all. Central Pain is not a hair shirt which God gives us to wear for some wrongdoing. Augustine’s remark above is worth reflection.

Dr. Wall observed that treating pain as a theological entity had led to the same sort of mistaken thinking which made pain relief during childbirth a capital offense in the 1500′s, because it supposedly robbed women of their salvation. This idea only diminished when the queen needed forceps from a Scottish doctor to help accomplish a difficult birth. After that, the idea of pain relief for childbirth opened up, with the eventual discovery of the epidural block by John Bonica, M.D., one of the contributors to Painonline.

Pain seems remote except to those who must suffer it, to whom it can become almost everything. There is a decided tendency for pain researchers to have some link to pain experience in their own life to interest them in the problem. In the case of Dr. John Bonica, greatly loved by all who knew him, he had been a professional wrestler in New York City. He trained by running through Central Park with fifty pound weights in either hand. When this caused back pain, which would eventually require surgeries for Dr. Bonica, he went to medical school. There he continued to pursue pain research, in his own interest and in the interest of others.

In the 1930’s Bonica discovered the epidural block. The first patient to receive it was his own wife in the late 30’s. That bears repeating. The epidural was invented in the 1930′s, yet who paid attention? The foolish notion that such pain relief for labor was religiously proscribed, or not so urgent, resulted in FIFTY years of delay before the medical profession began to use the epidural block for the general public. When the epidural finally did come into use, there were no apologies to the mothers who had suffered long, as if no one had been guilty of ignoring the problem.

Pain is truly the stepchild of medicine. When Morton, who invented ether anesthesia, was sued into starvation by those eager to claim credit for his discovery, the public did not rise up to defend him. The courts did not protect him from endless lawsuits, even as surgical patients for the first time could undergo surgery while asleep. This great benefactor of mankind was forgotten and ignored. Similarly, the failure to recognize John Bonica looms as one of the great and astonishing oversights in scientific history.

Note that few events have impacted medical practice more than the epidural block. Yet, Dr. Bonica was not even considered for the Nobel Prize. This amazing oversight shows how little pain occupies human attention until it afflicts a sufferer, at which point it may become the most important aspect of being alive. Many of the topics awarded the Nobel become less relevant when impact on human life is the measure. If those in labor could vote, there is little doubt Dr. Bonica would have received the well deserved award. This failure is one of the unfortunate examples of lack of concern for women’s health. It also shows that pain is an issue almost exclusively for those who must endure it.

Now, we find ourselves in a similar situation with Central Pain. For the sufferer, it is often converted into a theological matter, with remarks such as “There must be something God needed to teach you”, or “You are lucky. You have been singled out by God for a lesson”. Such remarks are not only not helpful, they are thoughtless and cruel. Those suffering spinal cord or brain injury leading to Central Pain are not different from anyone else. They have encountered something, usually an accident, which has rendered them in a great deal of suffering. As Dr. Wall has said, we should NOT think of this in terms of theology, but in terms of mankind’s obligation toward their fellows. He said we should think of it the same way we think of gall bladder disease.

Pain, even normal pain, is not well treated. Those medicines which relieve pain, the opiates, have serious side effects, not the least of which are the unplanned deaths regularly described in the press from overdose. There is a real need for research into the basic mechanisms of pain so that newer and better methods of treatment can be utilizated. The solution is not regulation, but research. Generally speaking, opiates may give sedation which lessens pain, but real pain relief, such as one finds with the local anesthetics, is still not available for Central Pain.

Oddly, society does not reward pain researchers. When Morton discovered ether, he was not thanked. Rather, he was sued to the point of poverty and virtual starvation for himself and his family. At that time, a third of those presenting at Johns Hopkins for surgery committed suicide rather than undergo open surgery while awake, anesthesia being limited to a stiff drink and four strong men to hold their limbs down while the surgeon cut. Morton, the great benefactor of mankind, was hounded and harassed for the rest of his life. If men treat the researchers with such diffidence, we cannot very well ask the Divine to reward them for their behavior.

Today we see many projects and many dedicated physicians hoping to remedy various ills. The hope of the Central Pain patient is that some will be motivated to work in the field of nerve injury pain, currently quite neglected. And such as do this humble work are in fact our hope.

And if it requires that the noble, the great, the proud find themselves in need of such services, like the queen in difficult labor, while we do not wish Central Pain on anyone, our hope is that they, unlike ourselves, can command some real funding and not just a token bit of empty philosophy flung at them. The six people at NIDCR who do the work on basic pain research should be six thousand,. Their salaries should reflect the importance of their work. The media should notice those engaged in this difficult endeavor. We watch and await OUR John Bonica, with hope.

Mention should be made here of the late Christopher Reeve, a victim of spinal injury, who hoped desperately for research funds to cure his malady, but generously donated a large amount of money to Central Pain research, although he did not have Central Pain himself. We know of no greater example of charity in this field.

 

*The quote in the title comes from Colonel Gail Halvorsen, the “Candy Bomber” of post WWII Berlin, who with the permission of General William Tunner, dropped candy to the children of former enemies. KSL media reported this story:

Halvorsen believes he’s remembered because what he actually delivered by parachute wasn’t just candy, it was hope in a city that was devastated three years before by U.S. bombing. Decades later, he met a German kid — all grown up — who still remembered a Hershey’s chocolate bar that landed at his feet. ”He said, ‘The chocolate was wonderful, but the chocolate was not what was important,’” Halvorsen recalled. “He said, ‘What was important was that somebody knew I was in trouble, and somebody cared. That stayed with me. And that was hope.’

“And then he said the most meaningful words that I’ll never forget: ‘Without hope, the soul dies.’”

Later, one of these children, now adult, came to Col. Halvorsen, and told him that the chocolate tasted great, but it was knowing that someone cared about their suffering, which was important, because it gave hope.

Fractionated Touch Yields Dis-Integrated Central Pain

Traditionally, it is held that touch is carried in the posterior spinal tracts, also known as the Dorsal Columns. In this designation are the fasciculus cuneatus (arms upper body) and the fasciculus gracilis (legs lower body)

However, it must be remembered that much of the anatomical work has been done in monkeys or apes. Assumptions have been made, but we are not certain about humans.

Touch and painful touch do not always go together. For example, touch on the face goes directly to the medulla, while pain from the face drops down to the cord with the descending tract of the trigeminal nerve, to join a tract, the substantia gelatinosa which is carrying pain from the body. This is why some with Central Pain from cervical lesions may burn severely on the face, mouth, and nose (occasionally the eyes as well)..

Is your examiner really able to assess your superficial sensory neurologic status? It is difficult and unless he is using von Frey hairs (light filaments which detect subtle sensory loss) you are not really being tested. The safety pin is WAY too much stimulus for testing superfical sensitivity loss and the patient may come off the table with a pin prick, due to the hyperalgesia which characterizes Central Pain with incomplete lesions.

Temperature sensation is tested in Europe but almost never in the United States. Managed care administrators are not likely to approve such time consuming efforts, since the room, the patients skin and the testing electrode (or test tube) must be brought to a standard temperature before evaluating for decreased sensitivity to temperature. Furthermore the patient, who suffers the agony of the damned in cold water or cold temperature blasts will wrongly assure the doctor that they have excellent temperature discrimination..

Touch itself has been subdivided and LIGHT touch is thought to be carried in the front of the cord, to the side, in the anterior spinothalmic tract (goes from the spine to the thalamus, at the center of the brain back from the eyes. No one is certain what touch is carried in the lateral spinothalamic tract, but monkeys have this so humans are assumed also to carry some particular sensation in the LST tract. Pain is also subdivided. For example, burning pain is thought to be carried in the spinoreticular tract, while ordinary pain is carried in the spinothalamic tract. These tracts go to both the thalamus and the subthalamic nucleus. Pain from the muscle spindles (contraction pain) is carried in the before described dorsal columns, it is thought.

So the question arises, “What is the pathway of pain coming up to the brain in those with transection of the spinal cord?” Theory from people such as Schott is that pain nerves travel with blood vessels and may reach the brain this way in those with interruption of the spinal cord. The point is that some selection and filtering of pain is going on even before it gets to the brain. Consequently, one wonders precisely which tract or tracts carry the burning dysesthesia which so torments the Central Pain patient. It is possibly the anterior spinothalamic tract, which also carries light touch. The lancinating or lightning pains are carried in the posterior columns, it is thought.

In 1949 experiments by Hardy showed that if a tourniquet is placed on the arm, pain disappears in increments. So called quantum pain means that one type of pain disappears, and then another, until the very last pain to go is a burning, which has little or no discriminative information, which is called protopathic pain. it is assumed that Central Pain is in fact protopathic pain, as the descriptions are very siimilar. If this is correct, the brain is operating on very little information and may be tgurning the recpetion end of things up, up, up producing the agony of Central Pain. When fully elaborated, the subject cannot tolerate the touch of clothing. Blasts of cold air are intolerable.

In the normal person, pain is felt as an aggregate of inputs. The patient knows if the pain is sharp or dull, hot or cold, diffuse or localized, and the location of the pain is typicaly known. These features are not so apparent in Central Pain, or perhaps not apparent at all. Nonlocalizing pain is not a familiar concept to most doctors, let alone the public, causing many communication problems.

The agony which is felt may be poorly localized, and temperature reversal may cause cold air ot result in a burn. In other words, those features medical students learn to ask about pain are missing in Central Pain. This causes not a few to doubt that the patient has pain, since even poor historians tend to be laser accurate about pain.

Central Pain patients should attempt to think about their pain sensations so they can educate their doctors Since most spine injured people have had surgeries, the CP subject will usually have ordinary pain from alteration of the motion segments of the spine This pain may respond to opiates, while the burning dysesthesi usually does not. Wall reported “Brain” that those with bright lesions on MRI tend to have NO pain, while those with no unusual signal on MRI are the ones which most typically develop central pain. This is consistent with the size of the tracts in the spine, since the ST tract is not a discrete tract, bur rather like telephone wire, a bundle which in total is less than 0.5 mm, which is below the resolution of existing MRI. The other tracts mentioned above are even smaller.

All of this may combine to make the examiner skeptical, the inabilty to describe abnormal pain, the normal MRI, the bizarre things which evoke the pains. If patients will concentrate, and then communicate with the doctor, it may be possible to gain understanding by the medical profession of what is going on. This will save a great deal of wasted time, expense, and accusation of malingering or drug seeking. We hope doctors will realize that much of what they learned in medical school did not cover what is necessary to understand Central Pain.