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Sam_Nova
@sam_nova

Posts: 10
Joined: Jan 01, 2018

Planning Visit for Epilepsy

Posted by @sam_nova, Thu, Jan 11 11:35am

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

Liked by seancaden

REPLY

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

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

@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.

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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”

@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.

@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.

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

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.)

Liked by Sam_Nova

@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.

@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.

Liked by Jamie Olson

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!

Liked by Jamie Olson

@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.

@bonnieh218

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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Thanks for the input, try to get as close as possible with out being at the most expensive place.

I’m told that I would be there for 5-7 business days. If anyone done this, has it gone beyond the 7 business day plan? Trying to plan out the flight plans.

@bonnieh218

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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I stay at the Brentwood Hotel. They have a Mayo Clinic discount making it a reasonable price. I have spent time walking around downtown checking out the hotels in the area. This is the one I’ve found at the most reasonable cost with very good accommodations. It’s a couple blocks away from the Clinic. They are connected to the Clinic via the subway system so you don’t have to walk outside if you don’t want to; here in MN that can be a challenge in the winter.

Unfortunately time spent there can be a challenge when planning flights. Depending on what I’ve needed to have done I have been there before for two weeks. After your initial visit they will be able to give you a better estimate of how long you may need to be there so you can adjust your plans.

@sam_nova

I’m told that I would be there for 5-7 business days. If anyone done this, has it gone beyond the 7 business day plan? Trying to plan out the flight plans.

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@sam_nova , you may find this link with other members experiences helpful. https://connect.mayoclinic.org/discussion/booking-travel-when-unclear-how-long-ill-be-there/

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