#rns system

I finally had my post RNS surgery doctor appointment today. He went over my CT scan I got right after recovery. It was weird looking at them. Especially the the second picture that is in color. I even said to him, "That's freaking creepy." Lol.

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He looked at my incision, which is on the left side. When he went to look at it, he went to the right side. I was like it's on the other side. Lol. He said the incision looked good. It is still not fully healed.

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I started this tumblr and also my instagram page to share my epilepsy story. I know I’m not the best at updates, sorry. But I’m hoping I’m at least helping some people. Even if it’s just one person. 

As you can see by the caption I do have some exciting and terrifying news. A few days ago I received a call from a woman who is the coordinator I guess, I'm not exactly sure what her title is. But anyway, she arranges where people can fit into the schedule for appointments as well as surgery. YES that's right I will be getting surgery for the RNS system. So this is why I am super excited, but also freaking the f-out. I talked with the woman a few times on the phone to set up everything. I just have a lot of feelings. The RNS system is something that I want. I want that “normal life” back, is that even a thing? I want to be able to drive again, and not lose my license. I want to be SEIZURE FREE!!!

My surgery for the RNS System is now going to be June 1st! As some of you know it was supposed to be April 9th, but because of the virus it got moved. I'm excited that it is finally happening.

Thanks for reading!

I know it has been too long! In my previous update post I talked about getting a SEEG. I got admitted into the hospital in the beginning of November...so I’m kinda late posting this lol. I had my surgery to get the electrodes inserted. But then in recovery I ended up having a hematoma that was the size of a fist. So I went back to the OR. I received 28 staples and then went to the ICU. I stayed there for half a day and then transferred to the EMU. Once I was in the EMU they finally hooked me up to the computer. 

I went in for surgery on a Monday, and I didn't actually come to my regular self until Thursday. Lol. Part of that reason is because of the crazy seizures I was having. For some reason I do remember a pretty hot nurse in the ICU, which would have been Monday because they were about to transfer me. And then I was looking through my phone and I did text someone back on Tuesday, which I don’t remember.I also don’t remember them taking me back to the OR to get the electrodes out. I was on to many drugs I guess. 

So that is a little overview about some stuff that happened in the hospital. I will post some more about my hospital stay and how I’m recovering. 

Update! On October 15th I got a MRI, CT scan and meet with an anesthesiologist. I did all of this for my SEEG, which will be November 4-15. I will be meeting with the surgeon this Friday. If you are not sure want a Stereoelectroencephalography (SEEG) is, it is similar to an EEG. With an EEG the electrodes are placed on the scalp. The electrodes for an SEEG are placed in tissue. So a robot will drill small holes in my skull to place the electrodes. Since my electrical activity is on the left side of my brain they will only put holes there. I’m feeling kinda excited and scared at the same time. I’m excited because it is one step closer to me getting the RNS System, but then scared because what if they screw up during surgery. 

But once I get the electrodes I will stay in the EMU (epilepsy monitoring unit) for two week. Fun fun! I’m so excited ...not! This test is to find out the exact spot or spots where my seizures start. So hopefully by the end of December, or beginning of January I can have surgery for the RNS System. 

Thanks so much for reading!