For many years I was reluctant to share my experiences with constant pain until “cured.” Then I dreamed about one day waking up with no pain from the thoracic outlet syndrome (TOS) which is a set of conditions that causes compression of nerves and blood vessels located between the collarbone and your first rib. I could have a neat and tidy TEDx-style tale of success detailing how I conquered all the obstacles that stood in my way to come out with a clear victory. I didn’t want to remain unfinished and I certainly wanted to avoid being an individual suffering from a chronic illness. I wanted to finish.
Since my first surgery in May of 2020 I’ve had a vertebrae removed; chest and neck muscle taken out; and had more surgeries, injections and nights in bed that I don’t prefer to admit. But the one thing which scared me the most wasn’t the looming surgery or the lengthy recovery that it brought, but rather being a person who was living with discomfort, with no final date to look forward to.
If something is “wrong” within the body it’s in instinct to want to find the issue and take whatever you can to correct it. When I first started experiencing pain I was informed something like “this will not be your normal.” In the following years, it was “you will improve within six months of physical therapy” and later, “you need to have surgery fast or could be at risk for permanent nerve injury.” Then, when people started to throw around the word “chronic pain” what I got was “you are not fixable.”
It’s a fact that I’m not near the end of my road yet However, I’m not sure I’m ready to consider myself to be doomed. After a painful, long two-year trek that was paved with false hope I’m working to accept that my story will not end in a pain-free happily forever. However, with the help of an emerging treatment option known as pain reprocessing therapy I’m beginning to believe that I’m more resilient than my suffering.
My chronic pain story began
Let’s start at where we started: my discomfort started to appear overnight in May of 2020. The night before I was totally fine however, the next morning I experienced the sensation of a dull, sharp discomfort on the inside boundary of my shoulder blade, and the sensation was like an elephant walking on my left chest. There was no ice pack, pill or stretching regimen could ease my pain.
I later learned that the sensation was caused by nerve compression. At this point in the pandemic, doctors’ clinics within New York City had just opened for non-urgent appointments, and I made the first appointment I was able to get to see an orthopaedic shoulder surgeon. After giving a very detailed description of my symptoms, I was given the “you’re healthy and young” speech and was then sent to the doctor with the prescription for an anti-inflammatory medication as well as instructions for resting for 2 weeks.
After a month, when my pain remained I had an arm and neck MRI to be diagnosed as having Biceps Tendonitis. I was informed that with 2 weeks of therapy I’d be back to normal. The diagnosis didn’t sound like a good idea to me, as back pain was among my main complaints and my back isn’t far from my biceps tendon. However, I was relieved to get some explanation. I attended three follow-up appointments within the next four months, and was repeatedly told that 2 weeks of therapy could be able to relieve my symptoms. However, I didn’t feel any relief so I finally sought an additional opinion.
I was able to perform less and less of the things that used to be regular in my routine…eventually I could no longer clean the dishes or reach for the blow-dryer.
At this point, I was feeling the impression that something was wrong. I could do less and less of the things which were once regular for me and any type of workout that involved my upper body would cause me to be uncomfortable for days. Eventually, I was unable to even wash dishes or operate the blow-dryer.
The answer to my pain-related diagnosis was an endpoint, but there was there was no map
The second doctor I saw was caring and sharp and confirmed that my ailments were manageable and appeared to have a better knowledge of the issues I was feeling. I felt heard and believed that she would be able to fix me. I was paired up with an elite physical therapist at her hospital, and I was to be working over six months.
When I failed to meet a recuperation “deadline,” my physical therapy specialist suggested that my issues could be due to TOS. Tos is a diagnosis made through exclusion or eliminating other possibilities. The reason for this is because the symptoms can be so different that TOS could easily be disguised as any of a myriad of shoulder ailments.
I took the details to my doctor I had the necessary tests and my TOS has been confirmed. I was finally able to receive my hard-earned diagnosis. I was given a 6-month TOS-specific physical therapy course. I was advised that surgery to cure this condition was difficult, rare and nearly never required. In the month of five my symptoms had worsened, and it was evident that I required surgery.
The doctor I saw, on the other hand did not carry out this particular operation, which required the removal of two muscles and a rib and a seven-day hospitalization. In actuality, no one within New York City performed it in the first place, at least at that time. With no doctor to carry out my procedure, I was no idea where I was going.
I really didn’t have great days or bad ones so that I could say terrible days or extremely terrible days.
The pain was relentless and nobody could remove it. In this period I didn’t have good or bad days, but rather poor days or extremely terrible days. When the pain got too intense I turned to sleeping aids in order to relieve the pain and day.
After talking to a handful of surgeons, I decided to remain on in the same path with an vascular surgeon in Boston. After another two months of long, and often painful diagnostic tests to confirm the diagnosis and confirm the procedure plan I had my procedure in April 2021. I’d like to end my story there.
The first six months after the operation was a gradual unraveling. In some way, I felt more ill, an aspect I was not ready to accept. My surgeon speculated it was possible that the blood clot might cause the increase in intensity of pain, however there was nothing else to do. He advised me to start consulting with a pain management specialist.
In the night after that recommendation my pain was at an all time high. The thoughts of my brain were swirling: The surgery failed and I could have an undiagnosed blood clot. Another doctor isn’t interested in me. In a flash I was transported in the emergency rooms. The moment I got there I was unable to function because my brain was overloaded to formulate sentences. Every time the doctor asked me to answer a question my brain would not let me speak. I was admitted to the hospital and checked for a stroke that test was negative, after my confusion diminished.
I realized that battling chronic pain, and my experience, the chronic stress condition–everyday can be a strain on our brains, and not only the body, but research has suggested an association to chronic pain with memory problems. I was not a fan of managing pain, as the word itself sounded like a way of letting go. It sounded to me like “My discomfort will never go disappear, and I need to learn how to manage it.” However, at this point when I was still experiencing confusion and brain fog after my hospitalization it wasn’t that I had an option.
Accepting the pain of life does not mean that you have to accept defeat.
Everyone who has chronic pain has heard of”the speech of pain. “the painful speech.” Each time you visit, you are required to provide a detailed explanation of your circumstances, the symptoms you’re experiencing as well as any other treatment you’ve tried, as well as the severity of your pain on a scale from one to 10. At the end of October 2021 — an entire year and a quarter into my painful journey, my “speech” was growing longer and longer. I was sad that I needed to include “unsuccessful procedure” at the end.
After delivering the revised speech to a handful of pain management specialist at New York, I was given different versions of “Sorry we can’t take care of your condition until the operation.” I felt extra broken. The only way to fix it was to go back to Boston to see an expert in pain management on my team of surgeons, who knew about my situation. That’s exactly my plan.
In November 2021 in the year 2021 received the depressing assessment: “You will never be pain-free.”
My pain management plan was comprised of further explanations and logging of pain, huge needles, complex treatment options, and injections which worked immediately and later wore off, and injections that didn’t take effect immediately, but started to work after a few weeks. There was plenty and in the end, nothing offered my long-term relief. After four 12 hour day trips to Boston over a period of two months, I finally received my notorious verbal diagnosis at end of December 2021 “You are never pain-free.” It was astonished at the fact that this announcement didn’t put me back into a downward spiral however there was something that was in my mind which I couldn’t get rid of contemplating and gave me hope.
Following my second visit to the pain management clinic I had one week where I experienced nearly no pain. Although I got what I really wanted, my pain specialist advised me that the injection of steroid responsible for the relief will only last 2 weeks maximum. I was more stressed than ever. My mind was racing with questions wondering when the pain likely to return? What should I do that causes it to return more quickly? Are I sitting in the chair in the incorrect way?
Then I realized that my brain was completely different. The pain consumed my every thought. In the few moments of relief the fear of the beginning of pain came into play. Then it hit me the thought that perhaps I could be among those 50 million Americans suffering with chronic pain. I opened the Apple Podcasts application, and typed in “chronic pain” seeking sources and found something that changed everything.
When I finally discovered that the pain reprocessing therapy completely transformed everything
My search led me to the podcast which lead me to an audiobook titled the Way Out: A revolutionary scientifically proven method of Reducing Chronic Pain written by Alan Gordon, LCSW, psychotherapist with a specialization in the treatment of chronic pain, and Alon Ziv, a biology researcher who holds a doctorate in neuroscience. I nearly laughed as I listened to. I’d spent the greater part of two years trying to convince medical professionals from all over New England to validate my experiences (to in vain) but here was a stranger Gordon who was basically reciting my pain-related talk to me. He described the stress he felt in a restaurant, where the uncomfortable wooden chair could trigger a flare-up. He also talked about worry about picking up an empty grocery bag in improperly and then everything. I continued listening.
As Gordon describes in the book in the book, when your brain detects that you are at risk, your brain emits extremely real pain signals to help protect yourself. But what happens if your brain is mistaken? What happens if the brain is convinced that you’re in danger all time? This results in chronic or “neuroplastic” pain or the belief that the brain is able to generate pain that isn’t structurally damaged.
A well-reported 1995 study published in The British Medical Journal often associated with neuroplastic pain described an incident involving one of the construction workers who had an injury to his boot that resulted in a nail breaking through and then escaping through the top. He was taken to an emergency room in pain and put under sedation, but after the doctors took off from the boots, they found that the nail in between his feet had been unable to reach the foot completely. “All pain is generated by the brain, whether it’s a precise indication that there is danger” states social professional Daniella German, who supervises the education of new PRT doctors within the Pain Psychology Center, where Gordon is the director of operations.
With these kinds of cases with this in mind, Gordon came up with PRT, also known as pain reprocessing therapy an innovative treatment technique that aims to reduce the fear of chronic pain and end the cycle of chronic pain. “PRT is a set of neuroscientific techniques which helps people understand the sensations in a way that is accurate,” says Deutsch. It is said that the Pain Psychology Center is currently treating more than 600 patients who require PRT. There’s an extensive waiting list of months to be matched with one of their therapists, all of whom need to hold a master’s in psychotherapy in and of itself, which is a sign of PRT’s necessity and value.
PRT was officially developed in the year 2017 “although our therapists had used the techniques prior to this time,” says Deutsch. Its Pain Psychology Center, which was founded in 2013, offers many treatments to treat or lessen chronic pain, including cognitive-behavioral therapies, psychodynamic therapy, intense quick-term psychotherapy (ISTDP) and hypnotherapy. mindfulness meditation and guided meditation training.
While PRT is relatively brand new, it’s increasing its accessibility. It is also offered via The Pain Psychology Center, it is also accessible by way of The Better Mind Center in LA as well as through hundreds of health care professionals that have successfully completed online PRT certification course, which is provided by the Pain Reprocessing Therapy Center, which is a part of the Pain Psychology Center and opened in November of 2020, specifically to help train more practitioners. “At our PRT Center, we train an array of health care practitioners in PRT and not just those with a master’s level in psychotherapy, but also doctors as well as chiropractors, physical therapists and psychotherapists” says Deutsch. He adds that the next training will feature more than 150 participants.
Since I started pain rehabilitation in the month of January, 2022 I’ve made remarkable progress. My therapist, who I see once a week via Zoom and who insists that I keep an “victory list” to track my victories to ensure that I don’t convince myself that I’m back at the same place on days that I’m struggling. We work to reduce anxiety thoughts, and trying to control my reactions to pain through guided physical tracking, and also determining what my triggers are–either thoughts or events that can cause flare-ups. In some sessions, we don’t speak about discomfort at all. This is a subtle, but sure indication that I’m heading towards the right direction as pain is gradually disappearing into a less and less aspect of my life. I’ve also experienced a few days of pain-free days and that’s something I was hesitant about believing could be feasible.
I’ve also faced some failures and breakdowns. There are times where doubts take over and I’m utterly scared that this is just another unsuccessful treatment and that I’ll never be without chronic pain. But, I’m trying to lift myself from an unending state of fight or flight by convincing my brain that it’s safe. This is not easy when I’m focused on driving out the discomfort. At the moment my primary goal is to continue to push forward.
I’m working towards taking my recovery day by day at one time and PRT has helped me become being at peace with myself in the present , while trying to change my brain’s reactions. Even though the notion that you’re “taking one’s life in return” is a cliché however, it’s empowering for me and reinforcing my faith in myself, despite being unable to provide definitive, conclusive evidence that this works. However, faith is.
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