Connect
Have you ever felt ghosted by your doctor?
I hate even to ask that question because, sadly, I think I already know the answer. Let me ask it another way: have you ever felt ignored by your neurologist? You submit a question to the patient portal. You wait expectantly for a week, two weeks, before you realize they aren't going to respond. The situation becomes more complex, so you rephrase your question, perhaps with greater clarification, perhaps with supporting information like seizure videos, PCP feedback, etc. Still, the message goes unanswered. Would love to know how you respond.
I have a few observations, and I'd also love your feedback. First, I'm trying to pose my questions as succinctly as possible. Just the facts. Nothing but the facts. My goal is to make it as easy as possible for them to skim and perhaps add my comments into my electronic health record. I avoid oversharing non-clinical information. Second, be clear on what I need them to do. For example, I have a blood test and no one has told me if I need to fast. So my question is as simple as Blood Test: Fast? Yes or No. We all know we may be able to find this out through ChatGPT or some other tool, but I always want to double-check with my Mayo doctors. Third, I need to have empathy for my doctors and the medical system. Many of our doctors are simply overwhelmed with patient volume. This year alone, I've had three specialists retire. When I press them on the root cause, it's not that they just want to play more golf; it's that they are facing burnout, unlike ever before.
So while I feel ghosting is never right. I always want to make sure I'm part of the solution, not the problem. I'd love your thoughts and perspectives.
Like
Helpful
HugInterested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
Connect
and I hope I don't offend anyone......but legal fees to defend themselves from erroneous claims have taken a toll on doctors who would like to stay in practice. My dermatologist retired when she was 42.
I agree I don't blame them.
Tagging a few other members of the Epilepsy & Seizures support group to see if they have ever felt ghosted by their own or a family member's doctor and if so, how they handled it @tlb101175 @anniemaggie @kel1 @bpq @tlb101175 @tchandos @lisav22 @baa @mdk1960 @njed.
I actually haven’t had this happen with Mayo but my son’s neurologist office before mayo when he was first diagnosed was. It was a scary time and rough that they weren’t responsive. Honestly, if I don’t get a response in the portal, I would call. Sorry you are not feeling heard.
Tracey
-
Like -
Helpful -
Hug
3 ReactionsI agree, Mayo goes the extra mile everytime. I just had several days at Mayo and I was amazed how everyone was patient, understanding, and proactive. They define medicine!
-
Like -
Helpful -
Hug
2 ReactionsI saw my MD. Neurologist the first visit. He was trying to be funny and said that it unbelievable that went 65 years not knowing that I had Epilepsy. He gave me scripts for meds and then said that there was nothing he could for me. I have gone back for some test, but never saw him again. The was 3 year ago. I do not know if I have had any Grandmal, they come out when I sleep or sleep walk.
-
Like -
Helpful -
Hug
3 ReactionsIf you have found a good neurologist, you are in good hands. I've thought back over the past few years and wondered what I would have done differently. I honestly feel that one of the key decisions would have been to find a good neurologist, no matter what. As I think back over time I cringe as some of the advice I was given. One neurologist told me to use a CBD cream, and my seizures would go away. They didn't. Another told me to try acupuncture, and it would minimize my seizures. It didn't. Then I had the ones that would just stack one ASM on top of another to the point I was on four ASMs at the end. We all know how that worked. Honestly, it was only when I got into the Mayo family that I was put on a strong foundation to move forward.
My local neurologist is just a bystander in my care at this point. He told me he only treats seizures not people. BTW he is the neurologist who ghosts me. It's funny, I saw him at Costco one day and he avoided even making eye contact with me. I go to Mayo and I see one head neurologist who I hadn't seen in six months, and he stops, remembers me by name, and even asks about my family. That is the Mayo difference.
-
Like -
Helpful -
Hug
3 Reactions@zeeboo
Have you ever bitten your tongue/cheeks, felt confused or tired or slept longer than usual or had other injuries?
You might consider a bed alarm and might. Want an anti-suffocation fellow if your seizures are very frequen. Do you sleep alone?
Take care,
Jake
-
Like -
Helpful -
Hug
2 Reactions@zeeboo
Oops, sorry about the errors above.
You may want to consider a bed alarm to notify someone or other seizure detection device especially if your seizures are uncontrolled and fairly frequent, perhaps an anti suffocation pillow might also be beneficial?
Take care,
Jake
-
Like -
Helpful -
Hug
2 ReactionsYes I have bitten those places. Very painful and bleeding. A couple times in my 30 years, I couldn't eat food, but lived on protein liquids for a couple days until things healed. How about you?
-
Like -
Helpful -
Hug
3 Reactions