Remembering Byron

Remembering Byron

This letter is dedicated to my former patient, Byron Boots, aka t.b. Carpenter, his writer’s pen name. Although Byron passed away 23 years ago at the tender age of 69, his memory burns vivid.

Byron was referred to me in 1989, and he became the first graduate of my multidisciplinary Functional Restoration Program, now considered the gold standard of evidenced-based treatment for chronic spine pain. The only problem was that the concept was brand new back then. Mine was the only program of its kind north of Sacramento in California at the time.

Naturally, all the local insurance carriers denounced it as a “mill” designed to make money. Hmmm, seems that kind of criticism is now leveled at my posts and books, because many people would rather believe in the ugly side of human nature.

Dr. Jeffrey Grolig

My argument was that it was the same model I had been taught in my residency training at U.C. Irvine. I had watched numerous intractable pain patients get off drugs and find a quality life with the FRP, an intensive eight-hour-per-day program that immersed a maximum of four patients with Physical Therapy, Occupational Therapy, and Psychology for five days per week for three weeks. The program changed their lives and marked a turning point for many off of opioid dependence, and toward a life of function and empowerment.

I used all the tools I learned in my specialty of PM&R. I administered trigger point injections instead of adding pain meds. Patients received epidural blocks instead of surgery, 95% of the time. Patients with pain flares sat in the spa instead of going home and lying in bed. They worked through their intense anger with the psychologist, and they found ways around their “stinking thinking”. They learned breathing techniques, Feldenkrais movement patterns, daily stretching routines, and many other self-help tools. Even as a practicing physician, some days I would put away my script pad, take off my white coat, roll up my sleeves, and take the group to the gym for my special brand of P.T.

And at the end of the intense three-week program termed Phase I, we held a graduation ceremony. All those who finished received a certificate and a designer-spine keychain. Cake and punch were served every time. I still see many of my graduates who say that program marked the turning point in their mastery over their pain. Many say simply that it saved their lives. A majority went off opioids. Some returned to work. All experienced vast quality-of-life improvement. We offered Phase II and Phase III follow-up care which incorporated one year of monthly and structured psychology-led support-group visits to prevent relapse.

I still see at least a dozen of those graduates. Many of them still require opioids. Because the truth of the matter is that opioids are a necessary and vital part of long-term pain control, at least in the hands of a board-certified Physical Medicine and Rehabilitation Specialist like me. Those who say otherwise have not experienced a patient of theirs commit suicide. I have. And more than I would care to mention.  No amount of sanctimony or arrogance by “Addiction Specialists” will convince me to allow another pain patient to do that.

Today’s young whipper-snapper anti-opioid-doctor zealots should be shipped off to some island off the coast of South America where they cannot do our country any more harm. Ignorance and greed are a nasty combination.

Yes, the FRP was worth its weight in gold to those patients, Byron included. But the insurance companies required us to break down the charges into 15 and 30 minute increments. This allowed them to pay less than 25% of the bill. We were forced to close our program in the year 2000 as we could not make ends meet. And that has been the experience of most other similar FRP programs.

Part of me died with my program, Performance Plus, and its closure. Following the wind up, I was forced to help pain patients with the only tools I had left, the only ones the government would cover. I still did trigger point injections, and I still sent patients for epidural blocks. I still warned patients about the dangers of spine surgery and opioids. I refused to prescribe OxyContin and most long-acting opioids. I rationed them because of my training while my colleagues welcomed them.

Byron convinced me to write a book. He came up with the title, “How to End Your Back Pain Nightmare”. I was not much of a writer in those days; instead I dictated the chapters. And they were all unreadable. Painfully unreadable.

Byron rewrote the entire manuscript on his old newspaper-reporter typewriter. I recall when he would pull up to my house in 1991 in his Uncle-Buck-like beater. Alarmed by the backfiring, the neighbors would come out to see who had been shot. The perfect manuscript stunk of stale cigarette smoke. But the words were fresh.

Byron retold the story from the standpoint of a patient, a sufferer. I published the book under two pen names. Byron’s was t.b. Carpenter. Mine was Justus R. Hope, because of the great injustices being done to injured workers in California’s worker’s compensation system at the time. Now the injustices are being dealt to the entire nation’s chronic pain patients. I was just a naive 35-year-old doctor back then. I thought the system was unfair. Now I am a 62-year-old dreamer. I still think the country can do the right thing, especially if everyone has the correct information, the facts.

I wrote the two Physician Primers, not to make a buck, but to change the world, to end the opioid epidemic. I wrote the Pain Patient Handbook for Byron. So, yes Byron, now I feel like a writer. I no longer dictate most passages; I type.  It feels good, and as Byron once told me, “Don’t worry about offending anyone when you write. If you have something to say, then say it. Don’t pull your punches for fear of criticism.”

I wrote the 25th anniversary edition of “How to End Your Back Pain Nightmare” aka “The Pain Patient Handbook” and dedicated it to Byron. Rest in peace my friend.

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Authored by: Dr. Jeffrey Grolig

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Becky

God bless you, Dr Grolig for writing in memory of your dear patient. Thank you to recognize critical chronic pain patients are committing suicide since they cant get meds to get a quality of life.

For those with targeted pain areas, your methods may indeed work. Unfortunately you can no longer do these because of greed by health insurance companies and lack of government mandated coverage and payment by health insurance companies.
People can NOT afford to try other modalities as the health care is approx 500 a month on low side for one person and a 4000 annual out of pocket .

My daughter has much damage by late stage Lyme, multiple co-infections, and constant EDS I and III damage, along with other autoimmune attacking body. The only hope is pain medication. I hope she can get pain from true 8 -10 down to a 6 one day. Only then may she be able to shower, wash hair, make minimal food, drive to a grocery pickup, take groceries in house, etc.. walking to a bathroom 10 feet away without major struggle or falling due to severe pain.
I need to outlive her. I hope she doesnt take her own life. It has been many many times she nearly gives up completely. 31 yrs, disabled from Lyme and EDS since 23.
Would a parent want to start each day with their child moaning crying rocking , bone swelling all over body, no exaggeration, CSF fluid leaks, skull swelling, nerve pain, muscle ropes, head pain so critical I can not open a hershey kiss? Would a parent want yo tell their child it is ok if they cant endure their pain, ok to leave?

Very sad. Doctor, you are one of the few intelligent caring doctors out there who honors the reason for your profession. Deeply thankful for you as a person. You are in a 5% of the 100%, based on the many experiences we have had.

Lisa Hess

Hello all. Interesting article, but these programs would never have worked for me. For the past 19 years I’ve endured over 25 failed procedures including trigger point injections and Acupuncture. I’ve been seeing a psychologist for 15 years to deal with my chronic pain. I’ve had 5 spine surgeries so far with my spine worsening everyday, but I’m also wracked with 8 other chronic auto-immune illnesses for which cause excruciating pain. Even a spinal stimulator failed. I’ve failed physical therapy twice because after the tenth visit Medicare wants an update on progress and I wasn’t making any progress, just getting worse. I had been going to the same PT since 2005 and have the best therapist work on me and when he said 4 years ago that there was no more he could do for me because I was not improving, he released me from his care. My body’s damage is that severe. At the hospital after the removal of the SCS surgery I was put on 1mg of morphine for pain treatment. I had to call my PM in another state (the hospital was in PA and I live in NJ) to talk with the PM Team at the hospital to tell them what they needed to give me to help curb the pain from the surgery because I was normally on a much higher doses of opioids for treatment. The resident said she would continue his instructions until I was released the next day, that never happened and by 6am the next morning my entire body spasmed me into a fetal position and I couldn’t move even a finger. It was one of the worst experiences of my life and I learned that if I ever go into another surgery I bring my own meds with me. This past September we began the weaning process to get me to the “CDC Mandated Guidelines” and have no quality of life anymore. So as someone said earlier, what works for some, may not work for others, but how I wish it would.

Louis Ogden

ruththella white, I had a similar problem when I was hospitalized. My wife and I spoke with my pain doc and he called the hospital a few times to tell them I would go into withdrawals if they did not stop shorting me meds. I was on a very high opioid dose and I also found the younger docs to be rigid in their thinking with delusions of grandeur. They would whip out their calculators and tell me that my dose, that I had been on for 7 years at that time, would kill me. They attempted to kill me by constantly lowering my dose. If it weren’t for my wife, I seriously think I would have gone into withdrawals. The young docs knew less about managing pain than myself or my wife. FINALLY, they put me on a fentanyl drip and things worked out but not before I experienced excruciating pain.

Louis Ogden

Cindy said “By the early 1990s in the U.S. multidisciplinary pain clinics were helping a lot of chronic pain patients. There were over a thousand programs and lots of research indicated the programs were the most effective of any treatment for chronic pain. Then along came the drug companies promoting their opioids as a great standalone solution to chronic pain and insurance companies decided it was cheaper to pay for drugs than these programs.” This is true, Cindy, and I tried many of these therapies; however, nothing was effective until I began taking opioids. I am happy for people that can improve by using these therapies but many of us have only been helped by opioids – until they started taking them away. I spent over 8 years on a high-dose opioid therapy and they were the best eight years of my life after being in pain since childhood. That is why it is so important to individualize treatments. What works for some does not for others.

Heather

I would also like to share another way that fibromyalgia patients are stigmatized.

I have learned that physical therapists won’t do hands on therapies (or heat treatments, apparently) because they’ve been trained that “fibromyalgia patients are addicted to touch and won’t want to exercise.”

I managed to find a physical therapist with a different philosophy who allowed me to exercise first and then would do some hands-on work. It was the 3rd time I’d been through PT and at the 2nd time, I flat-out asked why I saw other patients with heating pads and massage but not me and the therapist skirted the issue and seemed angry.

I had warm water therapy which was nice but limited in its help.

Loosening up my muscles with the hands-on modalities allowed me to grow stronger and I finally felt accomplished. Now I know that I waste my efforts anywhere else as SOON as some therapist sees the “F”(ibromyalgia) word in my chart. That’s sick.

I also was nearly denied orthotics for turf toe + plantar fasciitis and an arthritic spur by a podiatrist who told me that I should “try not to walk” because if he gave me orthotics (like he would for other patients in my situation without fibro), I would still be in pain “anyhow.”

The healthcare system is ill. Someone needs to take this on and get it fixed. If patients are demoralized and depressed, maybe the system is often to blame.

By the early 1990s in the U.S. multidisciplinary pain clinics were helping a lot of chronic pain patients. There were over a thousand programs and lots of research indicated the programs were the most effective of any treatment for chronic pain. Then along came the drug companies promoting their opioids as a great standalone solution to chronic pain and insurance companies decided it was cheaper to pay for drugs than these programs. They cut off funding and most of the programs had to close. There are fewer than 100 left today and they are all self-pay. Insurance companies are run by criminals who think only of their bottom line and get huge salaries for denying lifesaving care.

ruththella white

Dr. Grolig,
I completed every alternative treatment modality and was still denied opioids until the orthopaedic specialist’s second opinion. He said my condition (arthritis) was inoperable and that I needed a wheelchair. After his intervention my physiatrist prescribed opioids and a powerchair. Other patients were already receiving opioids. I am disabled due to 5 late diagnoses. Cushings, Pituitary tumor and apoplexy, DISH arthritis, Genetic heart defect, Multiple Sclerosis. The ligaments in my spine are calcified and huge osteophytes are compressing nerves, one spur is very near my thoracic artery. Three levels in my lumbar spine have stenosis and compression. The MS muscle spasms were misdiagnosed as small fiber neuropathy and dystonia. Now they want to take away the only medication that has allowed me to live. I have suffered abuse from medical professionals. Accused of being an addict when I wasn’t taking opioids, denied medical treatment and physically assaulted by paramedics and nurses because I complained about them withholding my pain meds as an inpatient. They refused to call my pain specialists, all are treating physicians at their hospitals. These abuses happened at 4 different hospitals. I overheard a group ER staff laughing. “He got her”, they said. The doctor refused to provide pain relief for an exacerbation of my back pain. Doctors left me in 10/10 pain for two weeks on 3 different occasions. I was ready to end my life. All I needed was a muscle relaxer. Younger doctors that I encounter are the most biased and went to great lengths to withhold my pain meds without tapering. Older doctors were willling to listen and step back after they read my medical record. The only care now is palliative. It is the medical profession leading the attacks on chronic pain patients and their doctors. It is time to fight, not just for myself but also the three elderly women I saw at my pain specialists office on Monday bearly able to walk.

Louis Ogden

I was forced to use CBT twice. It did ZERO for pain. It is not in my head. After trying every therapy known to science and a few that are not science, opioids have been the only thing that helps.

ruththella white

I need your help as an expert witness and any information you can provide. The State of Oregon has ended the medicaid coverage for all chronic pain patients. Oregon Health Authority will not pay for any medical treatment for chronic pain. My doctor has referred all Medicaid patients to their PCP and dismissed them from his care effective January 31, 2019. Oregon has not informed us of what our rights are. I have Medicare as my Primary insurance and Medicaid as my secondary carrier. I will pursue whatever rights I have. Has anyone ever pursued or heard of anyone that has filed writ of mandamus or complaint for declaratory relief regarding governmental interference in a chronic pain patient’s right to receive opioid treatment for chronic pain? I am looking for expert witnesses and Please email me with this information ASAP. I ONLY HAVE 45 DAYS TO REQUEST AN ADMINISTRATIVE HEARING. Ruththella@gmail.com

THANK YOU
R. White

Jeanne

Do you have a treatment for multiple schwannomas? Nobody has known how to treat my pain or even talk about it…what to do for it except surgery or pills. This time the surgery damaged me. 😢

Jillian Drexler

I’d just recently heard of you from another article you’d written on here & I have to say, you’ve given me hope. You’re compassionate, logical & you’re helping the chronic pain patient community. I got your fliers in the mail last week & they’re so nice & informative. I’ll definitely be passing them on to my doctors. Thank you for ALL you do.

Matt Smith

All I can think to say, amidst tears (I don’t know for exactly what), is GOD BLESS YOU …

Dr. Grolig, I’m sorry for the loss of your fellow patient and co-writer. Your story today has made you sound human. I don’t think it’s because I nor anyone else wants to believe in the ugly side of human nature that we have criticized you for your books, and yes I will admit I have. We’re scared and angry. Having to live with chronic pain and the very thing that helped us live our lives being ripped away from us a few years back. It left us feeling helpless, vulnerable, degraded and embarrassed. Angry also because the simple truth had been shaded in lies. I love your comment about these new age doctors you would like to ship to an island off the coast of South America. I can think of a few other passengers that can go with them! I see the other side of you now when you say you would prevent patients from committing suicide due to their pain, and also admitting that indeed some do still need opioid treatment. I’ve tried everything except for acupuncture and of course your FRP program. The last doctor I saw at a pain clinic told me I was no longer a candidate for a spinal block due to going into cardiac arrest after the last one. The few psychiatrists I’ve been forced to see, well let’s put it this way; they need to see a psychiatrist! They’re some of the strangest human beings I’ve ever encountered. All of this though doesn’t mean your program doesn’t work. Apparently it did for some. It’s music to my ears to hear you say you’re against spinal surgery. I told my physician the same thing and he agrees with me. I’m very fortunate to have him. Yes if the government would leave things alone, your technique may have caught on and cured a lot more folks than it did. That’s just it, I don’t think they want us to get better. My motto has always been if it’s not broke, why fix it?! Right down to the hair gel I used to use. It was awesome and then they had to change it, make it better; therefore ruining the product. Nevertheless I feel as though I owe you an apology.

Maureen M.

Dr. Grolig, Thank you…I enjoyed reading this. So, I guess your many years ago Program was the preceptor for the Mayo Clinic Pain Clinic 3 weeks Pain Rehab Program?
It sounds very familiar to theirs.
I recently went to Mayo in Jacksonville for a consult for the program. I was greatly disappointed though. My consults were negatively not what I expected (very short and non informative), the center was not what I had expected and the out of pocket costs for hotel, meals and the program itself were far beyond my affordance.
Also, I have no at home support to help me with continuing the program at home afterwards and the thought of the struggle of that exhausted me.
Therefore I canceled myself out at this time.
PLUS, on top of Chronic spine injury related pain I have Systemic Lupus and have been in a wicked flare up with it for several months.
I need to be in remission before exerting myself with that program. My spirit says YES, but my body says NO WAY CAN YOU DO THIS AT THIS TIME!
I would hope to afford and try it in the future though. Meanwhile I am doing my best to institute some of the therapies of the program into my life at home.
Thank you for being one of the good guys out there in our community and for also understanding that some of us really do need our opioids to live our lives.
Rest in Peace Byron. Best of all to you. Maureen M.

Ronda C.

👏🏼👏🏼👏🏼

Gary Raymond

Thank you, Dr. Groling. For chronic pain patients, opioids are as vital as insulin is to diabetics.
People truly in pain receive the full benefit of opioid analgesics and DO NOT GET HIGH. It is the recreational users who seek euphoria by abusing opioids, and then overdose. What has been occurring is a witch hunt sparked by very ignorant people who have never experienced chronic pain. Let’s take away their cocaine.

Amy Lewis

Thank you! I am currently taking a Multidisciplinary Pain Program. It meets once a month. We probably need to meet weekly. Behavior is hard to change but I am trying. One size fits all medicine for anything doesn’t work. There needs to be some flexibility. Pain patients are being treated like they’re criminals. We’re just trying to get through another day.