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Hospitals and Clinics Opening Up- Share your questions/concerns

Thu, 05/21/2020 - 08:05

Hi everyone,

I hope you've stayed safe and are doing okay in the past few months. As restrictions around the US, and in other countries, are lifting, many hospitals and clinics are restarting in person visits, tests, or admissions to the hospital. Many epilepsy centers are opening up too for 'elective' admissions. This may include being admitted for testing to see if someone has epilepsy or to find out where seizures start with EEG monitoring. Testing to see if a person could have surgery may be done and some surgeries are also being scheduled.

Some people are nervous or have questions about going for visits or being admitted to a hospital - we've been told for weeks to stay away unless it's an emergency to avoid risk of COVID-19. Yet it's important that people get the care needed for best control of their seizures/epilepsy. 

We'd like to know what questions or concerns you have now about getting care for your epilepsy.  This information will help us address your questions through We'll share concerns (no names, just concerns) with health care professionals and groups working to help people with epilepsy too. 

Thanks for sharing your story and concerns. If you have an immediate concern or problem, please call the Epilepsy Foundation 24/7 Helpline at 1-800-332-1000

Best wishes,



I’m a licensed clinical

Submitted by Patriotrehab on Thu, 2020-05-21 - 20:14
I’m a licensed clinical social worker as well as a person with epilepsy. I don’t have any personal concerns and I am personally looking forward to seeing my doctor in person and getting some of my tests done that I need as I know he is too based on our telehealth visit that we had last week, but some of the concerns that I hear from others that I work with professionally include:1. What will the hospitals do to screen people prior to admissions?2. Will I be allowed to have my caretaker (e.g. driver) with me for my outpatient visits?3. Will I be allowed visitors for my extended VEEG monitoring?4. Are the staff being screened for COVID-19?

I too am looking forward to

Submitted by birdman on Thu, 2020-05-21 - 21:15
I too am looking forward to my next visit in clinic with my epilepsy specialist.  I had my March visit postponed to April and now it's scheduled for July.  The COVID outbreak and its situation now have left me with little concern about visiting with my doctor in the outpatient hospital setting.  I will be extra careful as I am one who is highly removed from the public setting and may be less immune. I had my RNS unit implanted last June.  It's a little scary to look back just eight months ago I had another brain operation to remove an infected lead.  Afterwards I was hospitalized for a few days to treat the infection with antibiotics.  There I was in the infectious disease unit which today would probably be packed with COVID patients.  I was comfortable back in September when this took place, but I'd be scared to be there today.Now that I have the RNS unit I need to meet in person with my doctor so that he can adjust the setting on my device.  But weeks ago I needed to speak with my primary care physician.  I also have had "visits" with a therapist.  These visits were all to take place online or over a smart phone.  Well I don't have a smart phone and my computer's internet speed is S-L-O-W.  I had to talk on the phone for these visits.  I cannot and would not want to meet with my epilepsy specialist across a screen.  I find it very useful to communicate with my epilepsy center and my doctors there using email, but I think I would be extra aggravated if I were forced to rely upon telehealth for regular visits with the doctor.  My computer is too slow, and it seems the technique would miss some important aspects of my visit with doctor. Mike

thanks for sharing!

Submitted by Anonymous on Fri, 2020-05-22 - 08:39
thanks for sharing!

thanks for sharing!

Submitted by Anonymous on Fri, 2020-05-22 - 08:42
thanks for sharing!

Hi Gianna, thanks for sharing

Submitted by Anonymous on Fri, 2020-05-22 - 08:42
Hi Gianna, thanks for sharing. I've talked to some units opening up. While each is a bit different, here's a few things1- people being admitted are screened for COVID-19, timing of screening may vary depending on hospital or location2-visitor restrictions are in place but may vary. We will share more info as we collect it!

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