Why Can't Doctors Listen to Their Past Patients? My Experience with Permanent Nerve Damage, Chronic Pain, and Amputation

Living with chronic pain can feel like an endless battle. For over 13 years, I fought against debilitating pain caused by permanent nerve damage. Each day was a struggle with a relentless ache that influenced every moment of my life. Yet, my medical team consistently overlooked my requests for alternative solutions, especially regarding the option of amputation. As an amputee, I have clarity that I want to share, particularly with medical professionals who hold the power to change treatment narratives.

My first try-on of my Levitate Running Blade. Mando was dubious

Throughout my experience, I met numerous doctors who claimed time and again, they warned me, saying, "You don’t know how bad the pain will be after the procedure; it could be worse.” These consultations often felt more like lectures than actual conversations. My cries for help fell on deaf ears, and their warnings were trying to discouraged me from seeking the relief I desperately desired.

The silence from healthcare providers about patient experiences is alarming. Frustratingly, every amputee I know, who started their journey in similar circumstances, expresses nothing but regret for not having acted sooner. They often say, "I wish I had done this years ago." This sentiment resonates strongly with me. I, too, spent years bearing pain that was dismissed by professionals, even though it was very real. The toll this experience took on my mind and body was immense. I felt engulfed by pain, which cast a dark shadow over my life. Yet, my healthcare providers perpetuated a narrative that suggested amputation would result in greater suffering. Their solutions had me taking 72 meds a week and dying.

As I contemplated my decision, I began to ask myself why. Stepping into my unique experience gradually shifted my mindset, empowering me to challenge the prevailing narrative. Eight months after my surgery, I am not only able to share my story but also encourage a rethink within the medical community.

My first socket scan. Next Step Prosthetics has been AMAZING!

Following my amputation, I encountered something remarkable: a drastic reduction in pain. Contrary to what I had been led to believe, my new life has been liberating. I've taken up running—something I once thought impossible after years of suffering. I now feel revitalized, reclaiming both my spirit and ability. At 39, I am determined to be in the best shape of my life, fully embracing this newfound freedom. I rock climb, and ski bike, and hike daily; this surgery gave me my life back.

In my eagerness to understand why so many patients like me express relief post-amputation, I asked my doctor. He simply said, “Insurance.”

This response sparked anger within me. It is deeply troubling to realize how significantly the insurance industry influences healthcare decisions. The system frequently prioritizes profits over genuine patient well-being. This is infuriating when considering that complications from medical care and prescribed medications are among the third-leading cause of death in America, accounting for around 250,000 deaths annually. I have had over 30 surgeries in my life; how many of those could have been avoided?

We must advocate for change.

To those reading this who have faced similar challenges with chronic pain—know that you are not alone. Navigating chronic pain often feels like an injustice, driven by systemic failures within Western medicine. Our conversation about treatment options must broaden, especially concerning the obligations we have to patients enduring pain and seeking understanding.

To the healthcare professionals who genuinely listen and engage: thank you. My life improved not just because of my surgical team but also due to the supportive systems that helped me rebuild. I owe much to Dr. Corey, my pain specialist Dr. James, along with the teams at Next Step Prosthetic, physical therapy, occupational therapy, and my in-home nursing staff. Their compassion, insight, and commitment to my recovery breathed new life into me.

It is crucial for the medical community to embrace stories like mine as influential testimonials. Each patient carries a unique narrative that can illuminate the path toward healing, both for themselves and future patients. Listening to past patients can help guide doctors in alleviating needless suffering, enabling others to discover their paths to recovery. Treat us like humans, that is a good place to start.

As I move forward, I find my purpose taking on a new shape. I aspire to advocate for those burdened by chronic pain and share experiences that challenge conventional understandings within Western medicine. We must break this cycle of misunderstanding and ensure our voices carry the weight they deserve.

By sharing my experience, I hope to inspire a conversation that compels doctors to listen to and learn from their patients. Ultimately, it is our stories that have the power to rewrite the narrative.

Let us unite to build a system that prioritizes patient wellness and honors the wisdom gained through personal experience. This is about more than chronic pain; it is about hope, healing, and the right to make choices about our lives. As we look ahead, let us guarantee our voices influence change in the healthcare landscape. Together, we can create a brighter future for all those suffering.