In my previous blog post, I shared that I was accepted as a patient at the Mayo Clinic, renowned for its expertise in handling complex medical conditions. My condition, syringomyelia, has been challenging to diagnose and manage, prompting me to seek the renowned care Mayo Clinic offers.
Leading up to the appointment, I felt hopeful and relieved to have my case in the hands of such professionals. I was eager to finally have a doctor who listened to my concerns and ideas. After spending months feeling dismissed and struggling to find concrete answers, I really needed a win. Unfortunately, this was not the case.
Arrival and Initial Impressions
I arrived at the beautiful Mayo Clinic campus in Jacksonville, FL on Thursday, September 12 at 2:00PM following a tricky trip down due to heavy rainstorms and a faulty navigation system. The check-in procedures and clerical operations were remarkably smooth, which was a relief after the stressful drive. The staff were efficient and courteous, making the initial process as stress-free as possible. Despite the hurdles on the drive, I arrived just on time and anxiously awaited the neurosurgeon’s arrival in the treatment room, which my boyfriend humorously described as a cross between a Marriott and a hospital.
The Appointment
My neurosurgeon displayed my MRI imaging and described the processes that were occurring in my body to cause me pain. He exhibited adequate knowledge of the condition and described his ruling out of causes, such as a Chiari malformation, tumors, trauma, or tethered cord. He explained that there was no identifiable cause, and as if parroting other professionals, gave me the same spiel that an operation is too risky at this time due to complications that could leave me paralyzed or without sensation.
Since my condition is generally under-researched and not much is known, I’ve been exploring the idea of pursuing identification of my underlying cause, as I recently learned at the ASAP conference that syrinxes occur secondary to another morbidity. More specifically, I’ve been interested in ruling out autoimmune diseases, as I experience similar patterns of flare-ups and have seen others report having autoimmune diseases in addition to syringomyelia.
Despite my efforts to make it clear that my purpose in applying to the Mayo Clinic was two-fold, to learn how to manage my condition AND explore the possibility that an autoimmune disease may be a contributing factor, the neurosurgeon stated, “There is no evidence to suggest the two are linked,” and left it at that. I was given directions to “keep taking your medicine” and “try gabapentin” (*cue giant eye-roll*) to manage the pain. I was sent home with directions to continue monitoring my condition with routine MRIs and follow-ups with my local neurosurgeon. I was then informed that the Mayo Clinic will likely follow my case for a couple of years, then consider it closed and discontinue care if no drastic changes occur.
Disappointment and Reflections
Leaving the appointment, I felt a deep sense of disappointment and frustration. I had hoped for comprehensive guidance or new treatment options, but instead, I left with no more than I came with. This experience not only felt invalidating but also exacerbated my ongoing struggles with pain and the broader impacts on my mental health and daily life.
Everything reported by the neurosurgeon was framed in a positive light—statements like “luckily you don’t have any weakness or loss of sensation” and “your symptoms are still very mild” were common. While I acknowledge that my condition could be worse, and I am thankful that it isn’t, this positive framing felt incredibly invalidating. The excruciating neck, shoulder, and arm pain I endure daily is significant and real, and it feels dismissive when such pain is minimized or overlooked. Pain is not something to be disregarded, and my daily struggles should not be minimized by an overly positive perspective that doesn’t align with my lived experience.
Additionally, Mayo Clinic failed to address other critical aspects of my health, such as my mental well-being, job loss, and symptom flare-ups. This holistic oversight felt like a significant missed opportunity for a more comprehensive approach to my care.
I’ve never truly considered the realities of being unable to find adequate care until now. It feels as though I’m trapped in a nightmare, aching to wake up and find a solution that offers real relief and hope. This profound sense of entrapment and despair has been overwhelming, making it even harder to cope with the daily challenges my condition presents.
Moving Forward
Despite this setback, I remain determined to seek answers and figure out how to manage my condition on my own. I will continue exploring alternative therapies and pursuing research opportunities. My experience at Mayo Clinic has been a learning moment, and I hope to find a path forward that addresses both my medical and personal needs more effectively.
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