My family and I had always wondered if we would get more answers regarding my health from a major institution. Overall, the Mayo Clinic is the number one hospital in the nation, so I was overjoyed when my mom told me that they had finally accepted me for an evaluation in March, after already rejecting my case twice. Although the fusion surgery was successful in stabilizing my neck, I still had so many symptoms and was seeing no improvement. I was full-heartedly convinced that Mayo would bring more tests and answers. So many people had told me how their friends or family had been diagnosed and cured by Mayo, and I was ready for a miracle.
The plan was to receive thorough GI testing and explore possible causes for my constant headaches. Specifically, Dr. Patel was hoping that they would evaluate me for MALS and a CSF leak. I had a pediatrician case manager there who connected me with doctors in many specialties.
Prior to undertaking the journey to Mayo Clinic in Rochester, I had a two-hour virtual evaluation with the pediatrician managing my case. We gave him my entire medical history, and he asked many detailed questions. He was so thorough on the phone and I was so hopeful. Then, he set me up to see a neurologist, neurosurgeon, GI doctor, ophthalmologist, pain psychologist, physical therapist, and pain specialist during my time in Rochester. Much to my surprise, they simply did not have any expertise in Ehlers Danlos Syndrome or any of its comorbidities. The neurosurgeon I saw did not even believe in craniocervical instability and insinuated I should not have had my three surgeries.
Although we had come to Mayo to get more answers, none of the doctors even wanted to run any additional tests. My mom went into a heightened gear of assertiveness and demanded that tests be run. So finally on the last day, I had an MRI of my brain, a CT with contrast of my stomach, and an MRA with contrast of my stomach. I sobbed through every appointment and scan, mostly due to pain, but also, discouragement. I was heartbroken, to say the least. So many people had told me how the Mayo Clinic had saved their relative or cured a friend of theirs. I had let myself get my hopes up. During my stay there, I began to stop tolerating my tube feeds and spiraled downward due to a severe lack of hydration and nutrition. My parents and I felt so hopeless and defeated. I have never cried so hard or so long in my life.
No doubt, the facilities at Mayo are impressive, appointments run on time and providers take a lot of time with patients, but I was so unbelievably disappointed. The doctors had no depth or understanding of hEDS or its comorbidities.
Although it did not go how we imagined, we did have a couple of learnings. One was that when I become a little stronger, I might benefit from an inpatient pain clinic. They recommended Cleveland Clinic, Kennedy Krieger, and Cincinnati Children’s hospital. They enforced that with this diagnosis, I would have to learn to manage a good bit of pain, and maybe an inpatient pain clinic could teach me more strategies to do this.
