1. < Epilepsy & Seizures

Planning Visit for Epilepsy

Posted by Sam_Nova @sam_nova, Jan 11, 2018

Greetings,

I'm planning to make a trip to the Mayo Clinic to get reevaluated for my current condition. I been living with Epilepsy (Grand Mal Seizure) since I was 13 years old, now I'm 51. Over most of my life, I have been lucky where one medication (Dilantin) has controlled my seizures. Over the last three years I have been having seizures again, lately I had six seizures over the last five months. So I plan to fly out to a Mayo Clinic very soon, but would like more details from those that have been to the clinic. Here a list of questions.

Out of all the Mayo clinics out there, which one has the latest and most advance diagnosis tools for Epilepsy? I'm hoping with the latest diagnosis, they can isolate which part of my brain is giving me issues.

I'm been told that I would need to spend 5 to 7 business days. Just looking for a basic Idea what happens during this time, I understand that each person visit is different.

I'll have to stay at a Hotel for my visit. Are there places pretty close to the clinic? I'll will not be allow to drive.

During this test period, does a single Doctor work with you or is it more like a team of Doctors?

Anything else that you can think of would be very help.

Thank You

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Kristin | @jktaheri | Jan 11, 2018

Which Mayo are you going to? I have had much experience with the Epilepsy/Neurology/Neurosurgery team in Jacksonville. Life saving, magic crew there.

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2 replies
ahernandez | @ahernandez | Jan 11, 2018

Hi
I have been to the one in Rochester, MN. I had many tests done. As I'm 35 yrs old and didn't have any seizures or health issues until last March. They did an EEG, MRI, CT scans, PET scans, spinal tap, numerous blood tests and lymph node biopsy ( only because my lymph nodes were lighting up on the PET scan). I was finally diagnosed with Auto-immune Epilepsy last September. I started going to Mayo in July. I have a neurologist and a specialist with autoimmune neurology. I have had nothing but good experiences at this location. I have stayed at the Kahle Hotel which is right across the street from Mayo and you can use the underground system to get to the clinic.
I hope this helps.
Amanda

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1 reply
Sam_Nova | @sam_nova | Jan 11, 2018
In reply to @jktaheri "Which Mayo are you going to? I have had much experience with the Epilepsy/Neurology/Neurosurgery team in..." + (show)
@jktaheri

Which Mayo are you going to? I have had much experience with the Epilepsy/Neurology/Neurosurgery team in Jacksonville. Life saving, magic crew there.

Jump to this post

I'm hearing nothing but positive things about all the Clinics. I get the impression that Rochester, MN might have the latest resources for Epilepsy. Example latest MRI scanner "1st clinical 7-Tesla MRI scanner in North America"

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Sam_Nova | @sam_nova | Jan 11, 2018
In reply to @ahernandez "Hi I have been to the one in Rochester, MN. I had many tests done. As..." + (show)
@ahernandez

Hi
I have been to the one in Rochester, MN. I had many tests done. As I'm 35 yrs old and didn't have any seizures or health issues until last March. They did an EEG, MRI, CT scans, PET scans, spinal tap, numerous blood tests and lymph node biopsy ( only because my lymph nodes were lighting up on the PET scan). I was finally diagnosed with Auto-immune Epilepsy last September. I started going to Mayo in July. I have a neurologist and a specialist with autoimmune neurology. I have had nothing but good experiences at this location. I have stayed at the Kahle Hotel which is right across the street from Mayo and you can use the underground system to get to the clinic.
I hope this helps.
Amanda

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Thank You Amanda, very informative and Hotel sounds perfect for the visit.

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Kristin | @jktaheri | Jan 11, 2018
In reply to @jktaheri "Which Mayo are you going to? I have had much experience with the Epilepsy/Neurology/Neurosurgery team in..." + (show)
@jktaheri

Which Mayo are you going to? I have had much experience with the Epilepsy/Neurology/Neurosurgery team in Jacksonville. Life saving, magic crew there.

Jump to this post

I have no experience there. Though I have only heard wonderful things about the Epilepsy crew there. I wish you the best.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 11, 2018

Great questions, Sam. You might be interested in reading this discussion in the Epilepsy group where people share their experiences with various Epilepsy Clinics including Mayo's
- Been to an Epilepsy Monitoring Unit? What’s it like? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/

I'm also tagging other members who have been to Mayo to help answer your questions about doctors and hotels, and whatever else you'd like to ask. @dawn_giacabazi @cmcafee @twiceinalifetime

There's also more information about hotel recommendations, etc in the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ (I like the pool on the roof (indoors) at the Kahler Grand.)

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1 reply
Sam_Nova | @sam_nova | Jan 12, 2018
In reply to @colleenyoung "Great questions, Sam. You might be interested in reading this discussion in the Epilepsy group where..." + (show)
@colleenyoung

Great questions, Sam. You might be interested in reading this discussion in the Epilepsy group where people share their experiences with various Epilepsy Clinics including Mayo's
- Been to an Epilepsy Monitoring Unit? What’s it like? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/

I'm also tagging other members who have been to Mayo to help answer your questions about doctors and hotels, and whatever else you'd like to ask. @dawn_giacabazi @cmcafee @twiceinalifetime

There's also more information about hotel recommendations, etc in the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ (I like the pool on the roof (indoors) at the Kahler Grand.)

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Thanks for the input Colleen.

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seancaden | @seancaden | Jan 12, 2018

@sam_nova I don't have any experience with Mayo but I've been living with epilepsy for about the same length of time. I'm starting the process over again next week. I'm not sure what tests they are going to call for but hopefully the technology is better then the last time I had the tests done. I hope you find the help that your looking for at Mayo. It sounds like a lot of people that really care. Good luck.

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1 reply
bonnieh218 | @bonnieh218 | Jan 13, 2018

There are hotels within a few blocks of the Mayo in Rochester. Also hotels have shuttle buses that will take you back and forth from hotel to Mayo at no cost. There is also an airport shuttle.
I have had and continue to receive excellent care from the caring teams of doctors at Rochester. All the doctors work together as a team to find the best answers for you as an individual.
Good luck to you, feel confident in your choice to visit Rochester!

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2 replies
Sam_Nova | @sam_nova | Jan 13, 2018
In reply to @seancaden "@sam_nova I don't have any experience with Mayo but I've been living with epilepsy for about..." + (show)
@seancaden

@sam_nova I don't have any experience with Mayo but I've been living with epilepsy for about the same length of time. I'm starting the process over again next week. I'm not sure what tests they are going to call for but hopefully the technology is better then the last time I had the tests done. I hope you find the help that your looking for at Mayo. It sounds like a lot of people that really care. Good luck.

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Thanks for your support. Hope to get some answers.

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