@A MyEpilepsyTeam Member. If you t tell them, your doctor, nurse practitioners and neroligest why you want all this information and a printout of it
it should be noted with them in their records with you so they always have this information as a reminder when your asking for it. But it should always be there and no problem for you to have no access to the information as it shows you are also learning and Framingham works and what's best for you so you to can help in the process of tacking care of yourself and what needs to be done. It's not just up to the doctors to tell us how to take care of our self but to work with us.

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A MyEpile...

Everytime or even when I just call my neroligest to request any data on my neropace I can get a printout after the vist and I've told him am keeping a long running lot as the computer cM only store so much data and licensed what's happening when he changes medication.I've had no problem getting it from my neroligest or my hospital when I ask for it. I've never had to deal with the neropace company. The only time we had problems with it not loading or keeping any track of my sezuires or spikes of brain activity was when the batteries died after 5years of use.

Hi Gman, I have had the RNS since 3/19/18. It was only collecting data until 8/29/19 when the doc had enough seizure data to determine how he wanted to program the RNS. It will take some time to get it fine tuned but eventually it should take care of my seizures.

With the combination of the Left Temporal Lobectomy in 2002, the RNS implant in 2018, staying on top of my meds, avoiding stress, etc., I hopefully will never have a breakthrough seizure again.

The thing I am concerned with is all the spiking activity going on. From the report I was given I had over 2000 spikes. The lowest being 4 seconds and the longest being about 16 seconds. I believe ones after 20 seconds are what my doc consider a seizure (I could be wrong and it is 30 seconds).

If the RNS is only addressing the seizures and the spikes are still happening, I am concerned about my quality of life.

If the spikes are something the RNS cannot address, that is fine. I just want to know if/when they are happening so I can match up with my logs and get some understanding why some days I may feel really run down.

I have only had breakthrough seizures since 2002. I think 4-5 that I’m aware of. However I bet this spiking has been happening regularly before and after the surgery.

This information could really help me understand why my life has been the way it has and continues to be even though I don’t have tonic-clonic seizures regularly anymore.

Hopefully will have update on getting that info soon.

I would really recommend going with the RNS. If I were in your place, knowing what I know, I would go through the surgery

Please keep me updated...rooting for you!

Sounds like a great night! I installed a garbage disposal today and now I’m sitting outside at a bon fire meeting. It’s been a good day.

I forgot if I made this comment but one Dr. said there's not a difference in between the VNS and RNS so you might is well update the battery on the the VNS. The VNS helped a lot.