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

Comments [21]

Joel Goldstein, for BrainLine

Fighting the
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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.

Comments [21]

Thank you for educating, and bringing hope.

Feb 5th, 2016 11:34am

There is still no magic bullet for ABI. We've had good luck with several other alternative approaches since the article was written, including neurofeedback and Omega-3 fish oil supplementation.  Also, the science behind HBOT is now better understood. (though, like most things, still only partially). This summary, condensed from work by Dr. Carol Henricks of Arizona, sheds insight on current state of knowledge.  So in addition to increased blood profusion: 

HBOT triggers release of stem cells.

HBOT interrupts the cascade of injury following anoxia/hypoxia to reduce injury.

HBOT stimulates intracellular healing. Excess oxygen available in HBOT stimulates angiogenisis which is a way of achieving permanent healing.

Thank you to all who have written to share their experiences and express their support. Your brother in brain injury,  Joel Goldstein

Feb 3rd, 2016 11:26am

As a "high functional" TBI Survivor, I am a full advocate for integrative therapies.  I know that had I not taken advantage of my alternative colleagues I would presently be on at least 4 -5 pharmaceuticals for anxiety, depression, high blood pressure,etc. and not able to leave the house for fear of another car accident and not being able to be here to watch my children grow up.  While not what I used to be, and loved ones still struggling to think I am, it's a baby steps approach on a daily basis to do the best I can with who I am now.

NEVER give up and know that light you see gets a little closer every minute.

Feb 2nd, 2016 1:18pm

Remarkable! I have a 91 year old coherent lively Mom who caught her head between the car frame and the door a couple years ago. When her head is wet I can see the mal-formation of her skull on the side that bothers her. After reading your post, I wondered if you had tried the drops that add oxygen to the body and have you tried green juice with added beets which also oxygenates some and increases energy. I would not have considered these until reading your article. Thank you very very much and good luck!

Jan 26th, 2016 12:02pm

Working with a physician on the east coast, a medical school in San Antonio, and two physicians in San Antonio on a clinical research protocol. Will keep you posted about links as we progress. #SpeciaLives

Oct 8th, 2014 12:40pm

Joel,

I applaud your efforts to find every and any way to help your son conquer Traumatic Brain Injury. It is an endless job, but one that holds such value. I read on another site how your son, Bart, is maneuvering through his life with TBI with such a positive attitude.

My husband had a traumatic brain injury in 2005 and he did NOT let it beat him either. After three brain surgeries in two weeks and a year and a half of therapies and healing, he returned to his laboratory at Columbia University and led the research of students, postdocs and techs as well as wrote an NIH Grant, published scientific papers, and edited a book of articles from scientists around the world before he retired in September 2013.

    Stories like these of these two men help other survivors realize that there is hope after brain injury.

Keep up the good work.

Sincerely,

Donna O'Donnell Figurski
survivingtraumaticbraininjury.wordpress.com
donnaodonnellfigurski.wordpress.com

May 13th, 2014 10:06pm

I suffered a TBI about 6 years ago and just got introduced to this website. Reading your article has given me some hope. I'm on the verge of crying right now. Thank you!

Mar 14th, 2014 4:00am

Regarding the above comment regarding Functional Neurology and Missouri... please tell me where in MO you are finding the help and therapies your son needs. We are currently @ MRC in Mt. Vernon, Mo, and are looking at acute rehab options for our patient. We need help, support, and guidance as we travel this very barren road in SW Missouri.

Mar 13th, 2014 6:33pm

What an amazing time to click on your article!  My husband, son (with TBI) and I just got back from an appointment with a Functional Neurologist yesterday.  We are not new to this alternative therapy, but we are new to the fact that we found one in our hometown of Missouri.  We had traveled to Atlanta to the Carrick Brain Center that specializes in this type of therapy.  There is a Carrick Brain Center in Dallas as well, but that is mostly for athletes.  Our son is two years from the date of his surgery, he had a brain tumor that resulted in a TBI.  He continues to need a vent to breath, but only at night and still does not have a swallow.  Though many things were lost for him, he has gained much back.  It is a shame that the family members have to do so much leg work on our own to find these alternative methods.  I am just happy to have this website and can hopefully shed some light on the subject as well.  God Bless!

Mar 7th, 2014 6:12pm

Hi, Joel:  Thanks for such a wonderful article about "outside the box" therapies.  We as a family, know them well as my 17 yr old son has been recovering from a TBI since 2010.  As a constant advocate & author myself, I continue to look for additional ways to help my son and others.  The one therapy that is both conventional, alternative and cutting edge is categorized under "Functional Neurology".  My son went to a Chiropractic Neurologist.  This man understood more about the brain damage/body connection than all 4 neurologists that we met with put together - AND he was covered by insurance!  My son had extreme sensory hypersensitivity, vertigo, etc.  This man cured all of those symptoms in 6 months.  My son now works in a grocery store - talk about sensory stimulation!  We were referred to him by a mom who read my book whose daughter experienced symptoms similar to my son. I have attached the American Assoc of Chiro Neurologists here for you.  God Bless you and your family.  Feel free to contact me through my Facebook page, "Nourish Your Noggin!" I would love to speak with you further.

http://acnb.org/

TIna Sullivan - "Nourish Your Noggin!"

Mar 7th, 2014 1:26pm

I had tbi in 05 at age 19. I underwent a bilateral craniectomy with an abdomen to small to keep my skull alive and well so it was sent to a bone bank in Cali. You are probably familiar with the operation. I broke my back and my fam was informed that I could possibly be a paraplegic. I am not. My skull was replaced a couple months later after the swelling subsided. I spent 6mos in the hospital and after that I spent another 6months in outpatient rehab called NCEP. Nevada Community Enrichment Program. I highly recommend it to all tbi victims. I then did my own form of rehab as a caretaker of a best friend of mine who was restricted to a wheel chair. I did that for a couple years. Shortly after that I became pregnant and had another healthy 7 lb baby girl. She will be 5 this year. I already had a little girl when I was in my accident who is going on 11. I won't take up to much more of your time. My email address is CatAllbritton@gmail.com. If anyone has questions I urge them to utilize my email. I will be of assistance to anyone victims, family, and friends of thise who is suffering tbi. Love and light my friends.

Feb 17th, 2014 12:32pm

Great article and kudos to you for all of YOUR hard work. I know Bart had his part in it too but without his parents ad advocates he would have never gone as far. I think it's wonderful he is living in his own apartment and functioning at a much higher level than the Dr's ever thought was possible. I've read your book also and of course it was great too.

Sep 30th, 2013 10:01pm

Mr. Goldstein, how exciting to read about your son's amazing progress. My husband sustained a moderate to severe TBI nearly a decade ago, but has recovered very well. He's used two alternative therapies that worked extremely well for him: LENS, or Low Energy Neurofeedback Systems, and EFT, or Emotional Freedom Technique, also called tapping. May you and your family continue your good progress (TBI affects the whole family after all).

Aug 17th, 2013 1:14pm

Dear Mr. Goldstein....all I can say is WOW and finally someone who wrote something of immense value. I found you on the TBI survivors website and this article. Brainline.org is where I have found the most valuable information. My severe traumatic brain injury happened August 23,1997. It seems like yesterday. Even though I have 4 highly intelligent siblings, they have no interest or time in helping me. That is probably a blessing in disguise as it has made me search out everything on my own. Although I already had a BS from college, I never had this kind of passion to figure things out. This in itself is a miracle as I am nothing like a severe TBI survivor. It is in my opinion that you are absolutely correct that it takes both alternative and conventional therapies if you want to get any better following a severe traumatic brain injury...You are right on the money about the HBOT. There is a definite healing quality that comes from massive oxegen. So much to say, but I will wait until I hear from you. My email address is luluheadsiss@gmail.com or I can be reached at 727-494-5241...a friend from my church provided me with a cell phone, so that number may change one day. However, I am on the TBI survivors network and you can reach me there. Praise God for the support you have given your son. My mom has helped me some, but most of my family resists alternative therapy due to conventional medical teaching. My brother-in-law, Dr. Richard Goldberg is more open to it ever since Alzheimers came into his family....Please contact me...Thanks again for what you have done and are doing. Kerry Mischka

Aug 8th, 2013 8:00am

Shiela, Very glad you found our book of some use. The reason we wrote it, and continue to advocate, is to send a message of hope to survivors and their loved ones. Optimism, humor,an open mind, courage, faith and the Conspiracy of Decency - those are the keys to this long hard journey. God bless us all in the fellowship of TBI. Joel

Jul 1st, 2013 7:23pm

Hi. I have just read "No stone unturned". What an inspirational family they are. It has touched a raw nerve with me as our Son has been living with a TBI for over 6 years now. It has helped to keep me positive and that always helps. Thank you for your amazing book. Regards Sheila

Jun 29th, 2013 3:53am

Thank you, Joel, for your wonderful article in searching for alternatives beyond the Medical Model. I commend you and your family for your persistance! I had been doing this for my brother for years after finding out that he was deteriorating so badly with the "medical model", however, medical got rid of me for obvious reasons and have been totally ostracized from my brother. And I am the only living relative left. I had asked for HBOT years ago and the doctor dismissed my request. Same with massage therapy. I had to threaten them finally year later to get massage and here these doctors had it as alternatives in the Pain Management Chapter in a medical text book. Amazing! Thank you again for your accomplishments. Tracey A. Miller

Dec 23rd, 2012 9:37am

As I have said in other places, this book and the work Joel and his family have done is a big help to those of us with a brain injury. Though mine was caused by a brain tumor undetected for many years, the positiveness of Bart's story is inspiring! Knowing that he rose above the "bad days" and came out the other side is very helpful. Janet Schliff

Sep 16th, 2012 7:30pm

Very glad you found the article of some use Karen. Hope you can find someone to help you advocate, perhaps some BIA group in your area. We're still investigating emerging therapies, with a couple looking promising, but not quite ready to try. Let's stay in touch. Best regards - your brother in TBI -Joel Goldstein

Sep 11th, 2012 3:57pm

Karen, So very glad you found the article of some use. Hope you find some advocacy groups locally to help you in your fight. We're still trying to evaluate a couple more emerging therapies, but not quite ready to dive in yet. Let's keep in touch and help each other on this journey. Your brother in TBI, Joel Goldstein, nsunturned@gamil.com

Sep 11th, 2012 10:54am

Thank you! I am almost 2 years post-concussion with a" TBI". I am fortunate to have been a child and adult trauma therapist as well as a Critical Incident Responder before this work related injury. I am also fortunate to have had exposure to alternative healing practices. However, it has been very difficult to navigate and advocate for myself while being the injured party. I have had "experts" say I was non-compliant for seeking and using alternative methods. This is been and is a major issue since this is a work-related injury and I'm dealing with workers comp and their medical and legal teams. I am deeply grateful to you, Joel Goldstein, for all that went into this article, and to BrainLine for making it available. Karen Livingston

Sep 9th, 2012 3:55pm


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