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Have you ever felt ghosted by your doctor?
Epilepsy & Seizures | Last Active: Aug 27 4:16pm | Replies (15)Comment receiving replies
Hi Dan,
Thank you for bringing up such an important topic in our group discussion.
I was appalled to hear about your neurologist's comment that he "only treats seizures, not people." Such a statement suggests a fundamental misunderstanding of patient-centered care and seems to contradict the basic medical principle of "First, do no harm." I sincerely hope you no longer need to work with that neurologist.
I've certainly experienced feeling dismissed or "ghosted" by many doctors, particularly at the beginning of my epilepsy treatment journey in 2019-2020. I went through multiple doctors before finding one who treated not only my condition but also me as a complete person.
Here are some of the qualities I value most in the doctors who have helped me throughout my epilepsy journey:
- Holistic and humanized approach with their patients, focused on treating the whole person and not just the seizures. These doctors consider treatments that bring more benefits than harm to their patients and take into account how epilepsy affects all aspects of a patient's life.
- Values patient education on epilepsy instead of feeling threatened by it. I remember the first doctor who diagnosed and treated my epilepsy asked me to stop researching and studying epilepsy, as the knowledge I was gaining made him feel uncomfortable. In contrast, my current doctor appreciates my research efforts and welcomes my questions. My understanding of my condition allows me to provide him with more precise information about my symptoms and experiences, benefiting my treatment.
- Provides an individualized treatment. As my current doctor says: "everyone is unique". No two individuals, even with the same type of epilepsy, experience this condition the same way. I deeply appreciate physicians who recognize this and tailor their approach accordingly.
- Has honest and open communication with the patient.
And you, what aspects do you value the most in doctors who have treated your epilepsy? I'd be interested to hear your perspective.
Chris
Replies to "Hi Dan, Thank you for bringing up such an important topic in our group discussion. I..."
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First, I have to say what a great job you are doing as a group mentor. You're doing an awesome job and truly make a difference in this community! Thank you.
In Sarasota, we have a very limited number of respected neurologists. The ones that we do have generally have between a six- and eight-month waiting list. I did find one here that was good, but when he learned I had both FND and epileptic seizures he didn't want to deal with my case. He is the one who said he only treats seizures (which meant he wouldn't even acknowledge the FND seizures) and that I had to see a psychologist for treatment. I talked to her and she said no I had epileptic seizures and that I had already been doing everything possible for FND seizures and there was nothing more she could do. I then expanded my reach to Tampa (1 hour drive) where there was a well-respected neurologist who was also highly referred by my epilepsy support group. His answer was to do VNS surgery. I had epileptic seizures showing up with my EMU so he was ready to slice and dice. Because it was a Level 4 epilepsy center so he said wouldn't treat my epilepsy as I waited surgery or after surgery so he referred me to another epileptologist in Orlando (2 hour drive). This Orlando neurologist was the one who overdosed me on the ASM med which nearly killed me. During my journey I always asked questions, kept my journal, did my research, and read peer-reviewed neurology journals. Long story short my road to recovery began at Mayo.
I am afraid now to go back to a regular neurologist. The pool of neurologist here are few and to further complicate issues we're moving to Birmingham, Alabama to be closer to my wife's family. I'm trying to have my Mayo neurologist keep me in their family at least until we move to Alabama. Mayo taught me my dual seizure condition is not unusual and they said it can be managed. FNDs can be reduced, but it is a physical rewiring of my brain that has occurred, and I need to learn to cope. They now feel like my epileptic seizures are being managed with Vimpat, so they are hopeful for the long haul. Mayo also has warned me that if I'm over-medicated again it will cause long-term harm so they have said it is a tricky balance. This gets back to having a good local neurologist. I know I'm coming to the end of my Mayo journey because there is only so much they can do and their patient load is heavy. This is why having a local neurologist ghost you makes a challenging journey all the more difficult.
BTW I'd love to know your medical background. Anyone who says "Do No Harm" has taken some patient advocacy or med training. One of the positive sides to my healthcare journey and Mayo experience has led to dig deep into healthcare AI and medical training. I'm up to 30+ medical, patient safety and healthcare AI certifications. I've taken over 20+ hours of CME training at Stanford over the past six months. I'm also an FDA patient representative and certified patient leader. I have done all of this since my initial Mayo experience. I've determined myself to not let my seizures define me. I have plenty left to give and I intend to focus the rest of my days to helping to improve the patient experience and to provide some small insight to the medical ecosystem.