How is your daughter feeling?

It's dif per person, I agree with Sean's comment also, hang in there and try and stay pos

@A MyEpilepsyTeam Member
I do see my doctors at KU Medcenter. Dr. Carol Ulloa is my neurologist but the only time I see multiple doctors is when we look at results and make adjustments on the Neurostimulator (RNS). I only had to wait a couple months to have the surgery done. I pray everything goes the right way for her

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A MyEpile...

I appreciate your answer. I noticed that you are in KCK. So are your doctors at KU Medical? That is where my daughter’s doctors are. Her main Epilepsy doctor is pretty available to her. But she has about 6 or 7 other doctors that she sees at the hospital . Getting them all together to discuss her next step is sometimes very difficult and frustrating to her. She is waiting to hear when they can do the RNS procedure but, so far she hasn’t gotten any response from the scheduling office. The only information she has received is it could be anytime between August and November. How long did you have to wait before they did your RNS procedure?

@A MyEpilepsyTeam Member
My brain never needed to reboot? But anyway, I have had a Neurostimulator (RNS) for 4 or 5 years. I had so many EEG’s, including a surgical one (SEEG) where I didn’t have any seizures so they were a waste. I had no issues recovering from the SEEG. The RNS not only helps control your seizures but it also but it also records your brain activity 24/7. Whenever I have a seizure my mom will touch my head with a magnet. That will highlight the spot where I had a seizure for my doctors. Before I go to bed, every night, I turn on the RNS monitor and place a wand on my head. It will take a minute or two to download any seizure information from the day. When it is finished downloading I hit “Send” and all of the information is sent to my doctors. When I go see my doctors they get out their monitor and can see everywhere I had a seizure or aura and everywhere we marked important with the magnet. Most of the lines are level but when they go to a spot I had a seizure the lines get bouncy ——-wwwww——. They write down any information. Since I do still have some seizures the doctors have risen the amps multiple times. To do that they just place a wand on my head and do some adjusting on their monitor. I never feel anything. I’ve always been one to have 1 or 2 seizures per month but since I got the RNS there’s been more 1 seizure months. If she has more seizures she’ll probably see a bigger improvement.
I think my recovery time was 7 or 8 weeks. The only issue is that every 7 or 8 years the battery will need to be replaced. I’ve already had mine replaced once. All they had to do was cut my skin and pop in a new battery. It was just an outpatient procedure so I got to go home the same day. So let me know if I’ve forgotten anything.

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A MyEpile...