Fighting the "TBI Wars": New Alternatives for TBI Survivors

Joel Goldstein
for BrainLine
Fighting the "TBI Wars": New Alternatives for TBI Survivors

In A Farewell to Arms, Hemingway wrote, “The world breaks us all, then after, some are strong at the broken places.”

Many lives were shattered nearly eleven years ago when our teenage son Bart suffered a severe traumatic brain injury in an automobile crash. Our family’s road back has been long and bitterly hard — with twists, stumbles, wild goose chases, and even a few back-tracks. The book I wrote about our journey after Bart’s injury, No Stone Unturned, offers a rough, hand-drawn map, which though no one wishes to take, millions inevitably will. Over the many weeks, months, and years while Bart worked to regain some of what he lost, my wife Dayle and I puzzled out some useful lessons on navigating the harsh alien landscape. For us, sharing these lessons is a way to heal and get strong again. One of the most valuable survival techniques we learned is a way of evaluating alternative therapies.

Conventional medicine only takes survivors of severe TBI so far, often ending at the nursing home door, or heavily medicated at home, facing long empty hours, and overwhelming family resources. Unconventional therapies are not merely a reasonable option, they are a necessity. Our story is like so many others.

After a month-long coma, Bart gradually emerged with crippling cognitive, emotional, and physical deficits. And after eight months of grueling hospital therapies, the school district and the hospital agreed that he was not ready to return to class and would be better served by placement in an institution. In breathless desperation, we railed against warehousing our seventeen-year-old son in a convalescent home and fought, time and again, to win Bart a chance to struggle, heal, and make progress. We were determined to keep up the bar, to set difficult but attainable goals, and then raise the bar again and again. Who knows for sure how far any of us can go? It takes a little faith. These bureaucrats are not mean-spirited so much as driven by economics and by statistical models of probable outcomes, without taking into account the character of the boy, or of his family. We hunkered down to explore unconventional therapies.

Faced with the vast sprawling chaos of “alternative therapies,” and painfully aware that a false step might risk further injury to Bart, we were staggered. How could we determine which approaches were safe and held real promise? Separating the wheat from the chaff seemed near impossible. Should we accept the doctors’ verdict and wait, hope, and pray for the best?

Dayle and I cobbled together an unofficial “medical board” of trusted physicians, including the neurosurgeon who had saved Bart, performing emergency surgery without parental permission, do-or-die. “Members” didn’t know each other or that they served on a “board.” When we found a promising alternative therapy, we’d ask each member whether he thought it might do any harm. The therapies that got a clean bill of health moved to the next stage for further investigation. Some of the most promising and exciting approaches failed this simple Hippocratic test. Those that didn’t make the cut most often relied on medications with potentially serious side effects. Our bags were packed a couple of times, only to be shot down by a board member seeing potential harm in an emerging therapy.

Doctors generally offered an editorial opinion, too — suggesting that a therapy, though safe, was a waste of time and money. One trusty “devil’s advocate” was sure that all alternative therapies were bogus, admonishing that, “Not all who rave are divinely inspired.” But here we had the advantage — at least we knew we were ignorant. It seems a truism, but even the best-trained, most skilled, and well-intentioned professionals in the world often suffer a kind of tunnel vision, sticking to familiar, well-trod paths that pioneers once blazed. Before they eventually won universal acceptance, the practices of conducting heart-surgery or of treating peptic ulcers as infections were doggedly opposed and bitterly denounced by the medical establishment. We don’t wish to demonize doctors. After all, our book is dedicated to two of them.

Putting Bart through the rigors of even safe emerging therapies was serious business. How many failures could Bart stomach — or any of us, for that matter? Treatment inevitably involves time, money, effort, and emotional investment. Better be very careful in vetting potential approaches, for defeat has a corrosive effect. There was also the matter of “therapy fatigue.” Poor Bart had already soldiered through thousands of conventional therapy sessions — OT, PT, vision, speech, and cognitive therapy.

Eventually, we tried several alternative therapies, defined as practices falling outside the standard of medical practice and not covered by health insurance. Some were useless. Others, like Hyperbaric Oxygen Therapy (HBOT), Craniosachral, Boyles Sensory Learning, Novavison’s Vision Restoration (VRT), and supplementation a la Dr. Perlmutter, were remarkably successful for us, gradually transforming Bart’s life and prospects. Once safety had been determined, the vetting process involved speaking with parents, practitioners, and other responsible parties including manufacturers. No money-back guarantees. TBI is a life-long condition, and we rely on this method to this day.

Some successes were breathtaking. Bart had been allowed to return to school provisionally, but for half-days, in special ed classes, and accompanied by a dedicated aide to assist in class and assure safety. Every half hour or so he’d fall asleep, nodding off mid-sentence. We jokingly referred to these as power naps. Humor is a vital part of the healing process, and we’ve clung to it like a life-preserver. But sleeping the day away was no laughing matter. If he failed to keep up in class, Bart would be removed from the high school. An extreme extrovert, he desperately needed to be around familiar faces, among people who loved him to have even a fighting chance at recovery. Imagine our excitement and relief when after only four sessions of HBOT, he was able to make it through the entire day without a nap! Our lives took on a schizoid quality — one moment in panic, sadness, or anger, the very next in hysterical laughter, or dancing a jig over some small improvement in Bart’s condition. A working title for our book was Either Sadness or Euphoria, which pretty much sums up the tempo of life with TBI.

How HBOT works is only partially understood. The patient is placed in a diving bell which is gradually pressurized to 1.5 atmospheric pressures, the equivalent of being under 16 feet of water. The cabin is flooded with pure oxygen, which the patient breathes for an hour or more. Normally, oxygen, which constitutes 21 percent of the air we breathe, only enters the bloodstream one way — picked up in the lungs and carried via red blood cells to the body’s tissues. But breathing pure oxygen under pressure overwhelms the capacity of red blood cells, so blood plasma and other bodily fluids become saturated with oxygen — up to fifteen times the amount normally available. (Here the explanation becomes more conjectural.) Excess oxygen helps injured sites heal, by allowing them to revascularize — to re-grow the network of tiny arterioles and capillaries supplying blood to the injured tissue. The new blood supply does the serious work of healing — removing toxins and bringing in needed oxygen and other healing building blocks. That HBOT promotes healing is well established. Burn centers use it to speed recovery and reduce scarring and the FDA has approved it for carbon monoxide poisoning, radiation burns, crushing injuries, smoke inhalation, and several other conditions. Traumatic brain injury is not an approved application, though HBOT is part of the standard of treatment for TBI in much of Europe.

How other alternative therapies work is, needless to say, not well understood. Roughly 15 percent of TBI and stroke survivors suffer from hemaniopsia, or loss of part of one’s field of vision. While Bart’s eyes and optic nerves were fine, the area of his brain which processes visual images was damaged, causing loss of his right field of vision. Vision Restoration Therapy (VRT) succeeded in restoring almost 10 percent of Bart’s missing field of vision. It uses a specially designed laptop computer, along with apparatus to align ones head and eyes during training. While focusing on a center point on the computer screen, one has to click the mouse whenever one sees a light dot anywhere else on the screen. The dots appear randomly, but mostly just on the border between sighted and blind fields. Over several months, with practice, the border can be pushed back, bringing new areas into the sighted field. The therapy requires close concentration and focus. A welcome “side effect” of VRT is the increase in those cognitive abilities.

Craniosachral therapy involves a kind of gentle massage focusing on the head and spinal column fluids, intended to restore natural rhythms to the craniosachral system. It helped Bart cognitively and emotionally, though, like HBOT and VRT, the how of it is poorly understood. Scientific proof and complete understanding of underlying causes are still the gold standard for medical practice, but in their absence, our criteria are strictly pragmatic … we go by results.

No matter how encouraging, successes were purely anecdotal; there were loads of confounding variables and no semblance of scientific controls. Yet, in a neuropsych exam conducted several years after the crash, the examiner reported that he had hardly ever seen such improvement in someone so severely injured. Bart no longer suffered from attention deficit disorder, though only a couple of years earlier he had scored positive for eight out of 9 nine ADD indicators.

Gradually, we came up with an approach to fighting the “TBI Wars.” Its first principle was to assume a long-term perspective — to understand that there are many small skirmishes and no one, decisive battle. Although this is changing, conventional wisdom holds that real progress after TBI only lasts a year, or maybe two. We found that the window of opportunity remains open indefinitely. With our medical board up and running, we set out to make marginal gains, day by day, and came up with a dozen or so useful ways to fight a hard fight. Therapies that worked for Bart may not be safe or effective for every survivor. Even HBOT, used safely for more than 200 years by deep sea divers, is not suitable for those prone to seizures. Seems nothing is 100 percent safe and effective, even aspirin or acetaminophen.

Not everyone has access to such a team of experts, but your family physician, nurse practitioner, public health officer ,or neurosurgeon are good places to start. People with brain injury and their families, often exhausted by the daily scramble to cope, hardly need the additional burden of ferreting out alternative therapies. Exchanging information and results among the wider fellowship of TBI should help.

We’re not cheerleaders for any particular therapies, rather advocates of a persistent search for alternatives. In the future, I feel confident that improved treatments will emerge. After 10 years and counting, Bart still struggles with diminished short-term memory, visual field loss, and fine motor control. Psychologically, our bags are always packed. Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment near Albany. How different the outcome had we heeded the advice of well-meaning busy bureaucrats? If there is one universal truth about TBI, it is that our loved ones who are injured need strong advocates in order to navigate mind-boggling challenges.

Written exclusively for BrainLine by Joel Goldstein.

To read an excerpt from Joel Goldstein's memoir, No Stone Unturned: A Father's Memoir of His Son's Encounter with Traumatic Brain Injury, click here.

For more information about the book and the Goldstein family, click here.

Posted on BrainLine September 5, 2012

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