Have you ever felt ghosted by your doctor?

That is frustrating. It reminds me of how fortunate our family is living in Phoenix. Mayo is in our backyard, so once we found them, they are our sons only care team.

Tracey

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

Hi kids,

Reflecting on my journey, I’ve encountered a multitude of medical professionals throughout my epilepsy journey, especially neurologists and neurosurgeons. One experience stands out, where an epilepsy specialist conveyed a rather grim outlook. He suggested that I would experience seizures until the end of my life, which was disheartening. His defeatist attitude and certainty about my condition left me feeling hopeless at the time.

Fortunately, there are always new possibilities on the horizon. Contrary to his predictions, my seizures stopped at age 59. I’m now working with a new primary care doctor who is attentive and supportive in managing my both my epilepsy and medications, and day to day medical care which marks a positive change from my previous experience since my last and best neurologist died.
I’ve also faced challenges with doctors not taking my concerns seriously. One particular doctor questioned my knowledge of various meds when all I wanted to know was why he felt a particular drug was best.. I didn't want to take Topamax and addmittly it may have worked fine but I wasn't comfortable with it and refused to take it which led me to seek care elsewhere. my next neurologist also mentioned Topamax and I again explained why I didn't want to take that medication so he just moved on and mentioned another drug. I was familiar with MSU when we settled on, but at least he allowed me to explain my point of view and I felt the other doctor should've expressed his point of view.. It’s essential to find healthcare providers who listen and respect your insights, as collaboration is key to effective treatment.
Overall, while the journey has had its difficulties, I’ve learned the importance of surrounding myself with compassionate and understanding medical professionals. Not an easy or quick chore.
Dan, @dannoyes Like Chris, I hope you are no longer seeing the doctor who treats seizures, not people.
Take care,
Jake

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.

@dannoyes
Good afternoon, Dan!
Thank you so much for your kind words; they brought a big smile to my face! It is truly rewarding to know that I'm adding some value and helping others here in our group.
I'm sorry to hear about the limited medical resources in your area and your disappointing experiences in larger nearby cities. If it's any comfort, I had similar struggles during my first years of epilepsy treatment here in São Paulo, despite this being a very large city in Brazil with abundant medical resources. It took quite a while to find the right doctors for my care.
Since COVID, telemedicine has become much more accessible. I have a friend in a town in Illinois who recently explored online appointments with her doctor, whose office isn't close. I've also had virtual appointments with doctors over here, and many of my Brazilian friends living abroad use this option regularly. Have you discussed this possibility with your Mayo Clinic doctor? My 2021 appointment with them was virtual, and I've also had several online consultations with Dr. Donna Andrews in California. It might be worth exploring!
Regarding your question about my medical background - no, I don't have one. My education and experience are in Business Administration. Like you, I have dug deep into the subject and studied it. Perhaps my brief marketing experience in the pharmaceutical industry in the early '90s has helped me a bit in my current journey.
You have a lot of knowledge too, and knowing you have accomplished many medical trainings motivates me a lot! This connects to a dream of mine: becoming a certified epilepsy patient expert one day. I discovered such a graduation exists at the Université des Patients at Sorbonne in France (https://www.sorbonne-universite.fr/en/campus-life-1/culture-and-outreach/community-outreach/patients-university). Unfortunately, nothing like this is available in Brazil yet. Do you know of any similar programs in the United States?
You mentioned medical, patient safety, and healthcare AI certifications as well as the CME training you did at Stanford. I'm very interested in learning more about these and checking if they're available online. Would you mind sharing some links for me to explore, please? I'm also curious about your educational background and career, if you don't mind sharing.
As you said so well, we still have plenty to give! 💜😊 Let's keep dreaming and not let epilepsy define us.
Chris
P.S.: I was recently diagnosed with PNES as well, which immediately brought your name to mind. I'll be sharing this experience in the PNES discussions here in our group very soon.