Navigating a Complex Surgical Journey With Myasthenia Gravis

Navigating the world of complex medical decisions is never easy, and when living with a chronic illness like Myasthenia Gravis (MG), the challenges can seem insurmountable. My journey to find a surgeon willing to tackle the intricate and life-altering surgery I needed was marked by moments of despair, uncertainty, and the relentless determination not to give up. I hope that by sharing my experience, others will find strength in their own journeys.

The challenge of finding a willing surgeon

For those of us living with MG, every medical procedure carries added risks. MG can weaken muscles that are essential for breathing, swallowing, and other vital functions.

This reality became a significant hurdle when I sought surgery for my upper spine—a procedure that carried the risk of temporarily or permanently impairing these already compromised muscles. The potential of ending up on a ventilator, even if short-term, or facing further complications with eating and swallowing, was a risk many surgeons were unwilling to take.

For a time, it felt as though the medical community had given up on me. After several consultations, including an unexpected flight to the Cleveland Clinic with only four days’ notice, I was left questioning whether I was being written off due to the complexities of my condition. Was I, at the age of 49, already deemed beyond help? Had my participation in a palliative care program marked the end of aggressive treatment options?

Determination to fight for quality of life

But giving up was never an option for me. Despite the challenges, I was determined to retain a semblance of my previous quality of life. I meticulously documented my condition, remained clear about my needs, and insisted on being heard. This level of perseverance, while exhausting, was essential in finding a medical professional who would not only listen to my concerns but also empathize with my situation.

Ironically, after all the travel and consultations with renowned medical institutions, it was a surgeon at UCSD, right in my backyard, who took the time to truly listen. This doctor spent a full hour with me, reviewing my chart, understanding my needs, and even exploring the possibility of my participating in adaptive sports post-surgery—a glimmer of hope that felt almost unimaginable given the circumstances.

Advocating for one’s needs

This experience has taught me that advocacy is not just about speaking up; it’s about persistence, patience, and the courage to keep pushing forward, even when the odds seem stacked against you. For anyone facing a similar journey, it’s crucial to remember that it’s okay to feel overwhelmed, to question the path ahead, and to wonder if it’s worth the fight. But as my story illustrates, sometimes the right answer, the right help, is closer than you think.

The road to finding a surgeon willing to take on the complexities of my surgery was long and fraught with challenges. Still, it was my determination, coupled with a clear articulation of my needs, that finally led me to someone who was willing to take that risk with me. Together, we’ve forged a path forward—a new normal that, while different from the life I once knew, is filled with purpose, joy, and the possibility of reclaiming a quality of life I feared I might have lost.

Conclusion

To anyone facing seemingly insurmountable challenges in their medical journey, I implore you to try and try again. It’s easy to succumb to despair, to want to curl up and hide from the world, but there is strength to be found in perseverance. By continuing to advocate for your needs, no matter how many doors close along the way, you increase the chances of finding that one person, that one solution, that can make all the difference.

Remember, you are not alone. Your voice matters. Keep fighting, keep pushing forward, and never give up hope.