Would you recommend Rochester best Mayo Facility for Epilepsy?

Posted by wls @wls, Dec 24, 2019

We live in California and see there is an Epilepsy Center in Scottsdale, AZ but I do see Rochester mentioned quite a bit. Would love thoughts on best Mayo Facility to use for my son who is 22 and has epilepsy since he was an infant.

Liked by Leonard

Great question! Rochester Mayo was our 2nd opinion for my son and we were extremely pleased. But, we live in MN so it was easier for us. They are very thorough and we felt it was worth it.
Jennifer

Liked by Leonard, wls

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@wls
Hi,
Your probably referring to the E Center at Mayo Clinic in Arizona. I live in California also and there are quite a few Centers here from San Diego to Stanford to San Francisco to Sacramento and numerous points in between. I have been to the Center at Stanford and UCSF.
What type Epilepsy does your son have? I assume his seizures aren’t controlled.
The Mayo Clinic Epilepsy Center in Rochester consistently ranks number 1, however, I suppose all Mayo campuses can accomplish virtually the same results since they are all connected although not everyone is always accepted. Perhaps a mentor or moderator can inform us why some are chosen and some not.
Mayo recently refused to see my brothers 15 year old Grandson who apparently has a brain tumor and some other problems.
Best of luck to you & your son,
Jake

Liked by wls

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I'd also like to invite @dawn_giacabazi @johnbishop @jenniferhunter into this conversation for any input on whether they would recommend Mayo Clinic's campus in Rochester for epilepsy as you consider options for your son, @wls.

Liked by wls

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@wls I would like to add my welcome to Connect along with @lisalucier and other members. I'm a west coast transplant to the Rochester, MN area and have had exceptional care at the Rochester Mayo Clinic campus. If you are worried about the weather one of the bonuses is the skyways and underground subways that get you from parking ramps and downtown hotels to your appointments. And there is the Minnesota Nice that everyone talks about — it's real ☺
You may have already seen the site for the Epilepsy Center but if not here is the link: https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

Liked by Lisa Lucier, Leonard, wls

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@lisalucier

I'd also like to invite @dawn_giacabazi @johnbishop @jenniferhunter into this conversation for any input on whether they would recommend Mayo Clinic's campus in Rochester for epilepsy as you consider options for your son, @wls.

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@lisalucier @wls I don't have experience with epilepsy. My experience at Mayo in Rochester was in neurosurgery (spine surgery.) The care from everyone who saw me was excellent and compassionate, and honestly, I didn't know it could be like that. Top notch, and my results were excellent. It is still hard for me to believe it all happened and how I made a great recovery because of the excellence in care and my work in rehabbing. I highly recommend Mayo in Rochester.

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Leonard. We are from Boston, which I thought at the time was the best place for us to be for treatment. It wasn’t. Far from it. We heard about treatment at Mayo, Rochester so we contacted them. Almost immediately we found them to be far more advanced than any of the doctors we’ve seen. After visiting there for epilepsy testing, we knew we were in the right place. We scheduled brain surgery for my then 10 year old son. It was the best thing we’ve ever done. The Rochester Mayo was amazing. Heaven on earth as far we’re concerned. Wish you the best of luck.

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@boston2mayo

Leonard. We are from Boston, which I thought at the time was the best place for us to be for treatment. It wasn’t. Far from it. We heard about treatment at Mayo, Rochester so we contacted them. Almost immediately we found them to be far more advanced than any of the doctors we’ve seen. After visiting there for epilepsy testing, we knew we were in the right place. We scheduled brain surgery for my then 10 year old son. It was the best thing we’ve ever done. The Rochester Mayo was amazing. Heaven on earth as far we’re concerned. Wish you the best of luck.

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@boston2mayo
Good morning,
I thought Mass General was a top notch facility. You have peaked my curiosity, which doesn’t take much. There was a gentleman from Boston who wrote about bringing his son to Mayo quite awhile back, was that you by any chance?
I assume your sons surgery was successful without any residual deficits. Is he seizure free now? Does he take any medication? What area of his brain was operated on?
Blessings,
Jake

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@jakedduck1

@boston2mayo
Good morning,
I thought Mass General was a top notch facility. You have peaked my curiosity, which doesn’t take much. There was a gentleman from Boston who wrote about bringing his son to Mayo quite awhile back, was that you by any chance?
I assume your sons surgery was successful without any residual deficits. Is he seizure free now? Does he take any medication? What area of his brain was operated on?
Blessings,
Jake

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It probably was me. My son had surgery on his left frontal lobe about 9 years ago. The surgery was very successful. We weened him off his medication and he’s been seizure free since his surgery. We spent several months getting treatment at Boston Children’s Hospital. It was a nightmare, to say the least.

Liked by Leonard

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@boston2mayo

It probably was me. My son had surgery on his left frontal lobe about 9 years ago. The surgery was very successful. We weened him off his medication and he’s been seizure free since his surgery. We spent several months getting treatment at Boston Children’s Hospital. It was a nightmare, to say the least.

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@boston2mayo
There are so many horror stores out there it’s always good to hear a success story. That great he’s off AED’s, there awful. And seizure free too WOW!!!
CONGRATULATIONS!!!🎊 🎉👍🌈🏆
Jake

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Looking for advice on Mayo Clinic treatment for my adult son who has epilepsy. He has had 4 grand mal seizures, all nocturnal. Currently controlled by Keppra, but still experiences confusion spells despite increasing the medication. Considering an appointment at Mayo since all EEG’s and and MRIs to date have come back negative. It seems that more intensive testing is conducted at Mayo to determine the source of the seizures. Any personal experience/recommendations appreciated.

Liked by Leonard

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@gsj18

Looking for advice on Mayo Clinic treatment for my adult son who has epilepsy. He has had 4 grand mal seizures, all nocturnal. Currently controlled by Keppra, but still experiences confusion spells despite increasing the medication. Considering an appointment at Mayo since all EEG’s and and MRIs to date have come back negative. It seems that more intensive testing is conducted at Mayo to determine the source of the seizures. Any personal experience/recommendations appreciated.

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Hi @gsj18, welcome to Mayo Clinic Connect. You'll notice that I moved your question to this existing discussion where @wls asked a similar question. I did this so you can connect with other members who receive epilepsy care at Mayo Clinic like @jenfossbru @boston2mayo. I'd also like to invite @dawn_giacabazi @patrassi @ahernandez and @jenfossbru to this discussion as they too have experience with Mayo Clinic and the Epilepsy and Seizure Clinic.

I think you'll also be interested in this discussion:
– Been to an Epilepsy Monitoring Unit? What's it like? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/

Gsj18, is this an increase in seizure activity for your son?

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@colleenyoung

Hi @gsj18, welcome to Mayo Clinic Connect. You'll notice that I moved your question to this existing discussion where @wls asked a similar question. I did this so you can connect with other members who receive epilepsy care at Mayo Clinic like @jenfossbru @boston2mayo. I'd also like to invite @dawn_giacabazi @patrassi @ahernandez and @jenfossbru to this discussion as they too have experience with Mayo Clinic and the Epilepsy and Seizure Clinic.

I think you'll also be interested in this discussion:
– Been to an Epilepsy Monitoring Unit? What's it like? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/

Gsj18, is this an increase in seizure activity for your son?

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Not an increase in the Grand Mal, fortunately he’s only had on average 1 per year, but an increase in the confusion episodes, which in themselves we were told are mini seizures.

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@gsj18
Good afternoon,
Of course any seizure is one too many. I believe you’re talking about Absent seizures when you say “mini seizure.”
How often does he experience Absences?
How long do they last?
Is Keppra the only medication he is taking?
Has he been on other seizure medications?
Did Keppra ever decrease the Absences?
If I had my choice of where to go I would definitely choose the Mayo Clinic Epilepsy Center which is a level 4 center and has been rated number one in the U.S.
Best of luck to your son and family,
Jake

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@jakedduck1

@gsj18
Good afternoon,
Of course any seizure is one too many. I believe you’re talking about Absent seizures when you say “mini seizure.”
How often does he experience Absences?
How long do they last?
Is Keppra the only medication he is taking?
Has he been on other seizure medications?
Did Keppra ever decrease the Absences?
If I had my choice of where to go I would definitely choose the Mayo Clinic Epilepsy Center which is a level 4 center and has been rated number one in the U.S.
Best of luck to your son and family,
Jake

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I agree Jake, the Mayo Clinic is the best.

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@gsj18
Hi again,
I just wanted to fill you in a little regarding @boston2mayo. His son was having up to a dozen tonic clonic seizures a day. His son is now seizure & medication free because of the treatment received at Mayo.
Take care,
Jake

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