#seizure problem

[beccab1009]

[beccab1009]

My SEEG Story...

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. 

Thanks so much for reading! 

[beccab1009]

The Journey Continues...

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!

-Becca

[beccab1009]

RNS People

I have a question for people that have the RNS system. Are you still able to get MRI's after you get the system? I was just curious.

It would also be nice to hear your thoughts on the RNS system. I have not gotten it yet, but I'm on the path to either get the RNS or the VNS.

[beccab1009]

March 26th

Who's excited? It is purple day 2019! Remember to wear your purple and spread awareness about epilepsy!

[beccab1009]

Is This Awkward?

On Friday I went to a neuropsychologist again. This time he had a very nice male with him, that I would say was in his mid 20’s. Lol. I am not sure if he was doing an internship or his residency, but he was young. He did most of my tests that I had to do. Do you guys think it is kinda weird that I think he was kind of hot? Lol. I would also say I think there might of been some flirtation from him. Lol. He had to leave early and he asked me if I had any questions, I replied, “No.” I was talking to my best friend about it and she said you should of said, “Yeah I have a question. Can I have your number?” Lol. But that would be extremely awkward. Haha.

So I was just wondering if you guys ever thought one of your doctors, nurses or med school students were cute. Or if you think it is weird to think they are cute. Lol. I would love to read your thoughts and/or stories!

Thanks so much for reading!

[beccab1009]

Relationship Lesson...

I find myself hopeless kind of when it comes to relationships. I’ve talked before about my relationship experiences but this past one I wanted to share. I will just call him John. So John and I were talking for a few months. I told him that I have epilepsy and explained to him what it was. I explained to him that if we were going to be in a relationship I needed him to really be there for me. I mean for me at least I have my good days and then I have my bad days, and I need my babe to be there for all of those days. Lol. John understood all of that and said he would support me through whatever I was going through.

I thought John was the best thing in the world. He respected me with what I was dealing with and as a person. He would snap or text me every morning. On nights we couldn’t hangout we would facetime. I thought everything was going great. Until about a week after he asked me to be his girlfriend. We had a date planned that night, we were going to go out to dinner and then go bowling. That morning I had a seizure. It was the first seizure I had since I was talking to John. I texted him I told him what happened and he just responded, “ Oh, I hope you are ok.”

I told him I was fine and I would still be ok to hangout in the evening, but he did not respond. About an hour before he was suppose to pick me up I called him to see if we were still on, but he did not respond. So I texted him and asked but no response. Around the time that John was to pick me up I called him again and he did not answer.

Then I was getting worried about him because he is a person that responds pretty quickly. I was getting ready to text him again and I saw his respond to me having the seizure that morning. It made me start to think, maybe he’s freaked out. Yeah he said he was fine with me having seizure but I never had one when I was talking to him.

A few days later he called me and said he apologized for ghosting be kind of. He did say he was freaked out about the situation. He also broke up with me because he did not know if he could actually deal with all of that once it actually happened, which I totally get. It is a lot to take in.

I guess the reasoning behind this post is you might get yourself into a relationship and explain everything about seizure to your partner. They may say they are fine with you having epilepsy and will support you through your journey. But will they actually once you have a seizure when they are with you?

Thanks so much for read!

[beccab1009]

I was rockin' the purple robe and socks this morning to celebrate Purple Day! Make sure you do something today to spread epilepsy awareness. Even if it's just simple like wearing a purple shirt and of course wear it proudly! Happy Purple Day 2019!