Anyone been to the Mayo Clinic?

[Matthew74]

I have an appointment at the beginning of next month at the Epilepsy Center at the Mayo Clinic in Rochester. Has anyone been there? I would love to hear about your experience.

Practical advice and notes about particular doctors would be especially helpful.

Thank you!

 

[Matthew74]

op: No one?

I have spent quite a bit of time in the hospital, but never had the whole nine yards. I've never been off meds for a VEEG, never evaluated for VNS or a diet, and haven't considered surgery since I was a kid. I also have never been evaluated or treated in any serious way for depression.

I have wanted to do this for a long time, but I'm terrified. I am NOT looking forward to being off meds. I will be alone. Emotionally it's going to be tough.

The worst of it is that I don't trust doctors. My experience has been frustrating. I'm afraid in the end that I'm going to end up worse than I am now. However, if I am going to do well I need to have a positive outlook.

I was hoping to hear from some people who had been to Rochester, to know better what to expect, and to feel more comfortable about it. I can't stand not knowing what is going on, or just trusting doctors to make good decisions. To be honest, I guess I'll have to accept that they may make the wrong decisions.

 

[epileric]

I only know the Mayo clinic by reputation & its reputation is excellent.

I've also recently been taken off my meds & observed with an EEG & constantly on camera as well as breaks to go for other tests/scans. You have to realize that the best place to have a T/C seizure is in a hospital bed with medical staff that have been trained specifically to deal with your seizures keep the chance of hurting yourself to a minimum.

Remember to bring books & music (I took my Kindle & MP3 player) to kill time. It can get boring waiting for a seizure to occur. Also bring a lot of snacks depending how long you'll be there (I was observed for 3 weeks because my brain refused to convulse).

I was told by the doctors that these days they gradually lower your dose of meds in hopes of provoking a smaller seizure and that's what they did to me in Montreal.

Also, when asking for opinions on doctors or medical staff always ask why. The reason someone dislikes a doctor might be the reason you do like them (and vice/versa).

 

[epileric]

Also.....

I forgot to say that despite your being scared it was for me a really cool experience because the whole clinic was for hard-to-cure epilepsy so I was surrounded by other patients, all who could relate to what I had gone through (& vice versa). That connection/understanding with others in my situation made it more than worth the time.

 

[Matthew74]

Thanks, Epileric!

"The best place to have a T/C seizure is in a hospital bed." I know, but somehow that doesn't help. I keep picturing my tongue. I'll try to imagine how awesome I'll feel off the meds when I'm not seizing.

Snacks - good plan. What did you take? I'm going to eat chocolate and drink coffee. I love coffee, but almost never drink it, and then almost always decaf. I'll be jumping off the walls.

As far as I know I've never met another epilepsy patient in a hospital. At Beth Israel I had my own room and was pretty drugged up.

 

[masterjen]

Check to see if the facility has internet. Mine didn't, so bought extra data for my smart phone. Ask about tv. Bring along a video game console if you have one or know someone who does. Depending on how quickly you have seizure (in my case not very) it can be a rather boring undertaking.

 

[epileric]

Thanks, Epileric!

"The best place to have a T/C seizure is in a hospital bed." I know, but somehow that doesn't help. I keep picturing my tongue. I'll try to imagine how awesome I'll feel off the meds when I'm not seizing.

I thought the same thing but a few days after they started lowering the dose I still took enough that I didn't feel fantastic but I started having more partials so that expectation was shattered. I do hope you at least get a few days that your levels are low enough that you can be side-effect free.

Snacks - good plan. What did you take? I'm going to eat chocolate and drink coffee. I love coffee, but almost never drink it, and then almost always decaf. I'll be jumping off the walls.

I took a huge jar of nuts from Costco, a couple of bananas and a few protein bars. I do admit that I was cursing myself for not bringing chocolate or at least some sort of dessert. Also, bring cash in case you have access to a cafeteria. Not all of them accept interac or they charge extra to use it. My appetite was next to nothing but a couple of times I was glad to have access to the caf.

As far as I know I've never met another epilepsy patient in a hospital. At Beth Israel I had my own room and was pretty drugged up.

Because you're going to the Mayo clinic I'm assuming it's an epilepsy clinic you'd be going to. If so, then if they let you mingle or you have one or more room mates I'd assume they'd have epilepsy and are on similar meds as well. You've got to bring us a report on how things go. Maybe document it in The History Book

Meanwhile, good luck & if you have any more questions about my experience, just ask.

 

[Matthew74]

I started having more partials so that expectation was shattered

I hear you. I was trying to put a positive spin on it. I expect to be quite miserable throughout the whole thing. I'm having little partials all the time now (sensations), but those will get scary quick, I should be having bigger ones in a few days, and maybe even T/Cs. It will mostly depend on how fast they take away the meds. If they go real slow it might take a while, but if they go fast enough for me to have withdrawal seizures it could get ugly. The best I can make of it is that I can just let it fly and forget about my dignity.

 

[epileric]

Dignity? I never felt like my dignity was at stake. You're in front of medical professionals who have seen seizure after seizure & are more interested in seeing it from a medical and analytical perspective. Should you have a room mate then remember that they'd probably empathise with you the way you would with them (I'd assume) should they convulse.

After every partial seizure though, they did ask me various questions to check my awareness & ability to communicate.