I discovered the “multidisciplinary approach to chronic pain”: combining a medical search with researching your entire body and mind. That knowledge started a change, a shift, in my thinking.
My patient story is about meaningfulness in life. And about an overwhelming pain in my left leg and back.
But above all it’s about hope, for all chronic pain patients in and outside the Netherlands, that change will eventually come. Change around this invalidating pain in your life and mine.
My hopes were dashed around 2016, 2017. I had struggled with lower back pain (LBP) for several years, which meant that I was participating less and less. Participating less in my job, in my family, in my hobbies (making music in a band), in my social life. I went to all kinds of doctors, therapies, therapists; I tried the craziest things to get rid of the pain. I got corticosteroid injections, epidural injections, spinal cord stimulation, colour therapy, hypnosis, opioid analgesics, acupuncture and a lot of other therapies. Nothing helped and at the end of 2016 I lost my hope.
But first, let’s go back to where it all started. When I was a student at BUAS University (formerly: NHTV), I got lower back pain for the first time. And actually my ‘back’ was not the biggest problem, but the radiating pain in my left leg. After lying in bed for a few weeks and just ‘waiting’ for many months, I was operated on for the first time at age 19: a herniated disc L4 / L5. I did not know what happened to me, being in hospital for the first time. Recovery went reasonably well. Fortunately, I kept going in terms of study, did an internship in Guatemala, wrote a thesis in Malaysia and graduated with honours. While travelling, I discovered the beauty of meeting other people and cultures and I turned into a ‘world citizen’. After some projects and temporary first jobs I found the perfect job at JoHo for talent development and international cooperation.
“After lying in bed for a few weeks and just ‘waiting’ for many months, I was operated on for the first time at age 19: a herniated disc L4 / L5.”
Years followed, with annual maintenance of my lower back by exercises, physiotherapy and chiropractic.
Until 2012, when I again felt that radiant pain that was so familiar to me. Oops, bad stuff, I knew. Months of hospital visits followed, the doctors doubted, did not dare to do a new surgery at exactly the same place. There was a hernia, not a huge one, but very painful. Eventually I was operated on again. I recovered quickly, but the pain returned several months later. And it has never left since then. In the early days I still had hope for improvement, there was all kinds of therapy and treatment to try. I’ve been to like 25 places.
In 2016 there was excitement in my life again. I really wanted to go to a Bruce Springsteen concert in the Netherlands, in June. But, I was operated on in May to get a neurostimulator. Just some two or three weeks after surgery I visited the concert making use of a wheelchair. I had a great! spot on the wheelchair podium, at the Malieveld in The Hague. All the emotion came out through the music. The hope was that this neurostimulator would make a difference this time. In 2018 there was hope that a spinal fusion would really help. But none of it helped, or only a little.
Like no other I know this hope of every pain patient. But I also know the disappointment, which often follows hope. It is almost impossible to manage the daily impact of pain on yourself, on your family, your loved ones, but also on your employer, your social relationships. That impact is so huge. Pain changes everything.
I discovered the “multidisciplinary approach to chronic pain”: combining a medical search with researching your entire body and mind. That knowledge started a change, a shift, in my thinking. I often looked for things that could affect my pain, but still couldn’t find them. Except for one thing: playing the piano. While playing I felt less pain or even no pain. How could that happen? That’s the power of music, the power of distraction. But then why did it only happen while playing the piano?
Since 2019 I have more hope again. I am reinventing myself, looking for new meaning. I refuse to give up my role in society. If it is not possible with a paid job, then I will engage in other ways. I support a foundation that makes music in hospitals, with children and young people. I also wish them the power of music.
And now there is iPSpine.
A new, hopeful study that in time could make a substantial difference for back patients like you and me. A project that does not work on symptom relief, but on disc regeneration as a real cure for lower back pain. I look forward to share my patient story and contribute to the project by giving my patient view on developments.
And it may also give you a little hope. Not for now, not for the quick fix. But for the near future.
Let’s hope together!
From now on I’m a proud member of the iPSpine Patient Advisory Board.