March 26th Purple Day Worldwide
If you aren't on Twitter or Instagram, you might not of known it was the annual worldwide day to spread Epilepsy Awareness yesterday. I wanted to say thank you to everyone who supported me through it yesterday, as you followed along on either SM outlet making various postings.
Also, another thank you to everyone that is sharing my blog to share our family's journey, while also helping others. If you are new to my blog, I encourage you to go to the home page and read how my journey originated, and read through the all the postings if you have time as well. I do not have the FB page anymore, so you can reach me here or on my SM accounts and or my email of course. (you can find all of that on the homepage, and also see the new layout) From now on you will notice MWF will have themes, and you can just click on that themed day to reach all of those postings.
Did you know Mondays:
Every Monday I will give doctor and or Mayo updates if there are any.
Otherwise: I will focus on various Epilepsy topics/facts about me.
Did you know I have: The RNS Implant?
***I am not a doctor, all information is personal feelings***
After many years of having drug resistant epilepsy, many options were discussed and at the time a company called NeuroPace created the RNS System. As stated in the graphic above we knew there was no cure for my epilepsy, but this device provided us HOPE! The goal was having controlled and less seizure activity on a daily basis. Possibly even going off seizure meds as well.
The RNS is placed under the scalp in the skull. The battery with 2 electrodes stemming from it which are placed near my temporal lobes and near my hippocampus. (see image)
The RNS actually fits in the palm of your hand.
Think of how a pacemaker detects and treats abnormal heart rhythms, the RNS is supposed to prevent seizures before they come on. If it detects abnormal brain activity it is calculated by the RNS Engineer along with your doctor on what strength and how often the device should go off. (this calculation is changed at each of my visits, to make sure I do not feel it) My original RNS was implanted May 2017, and I was having great results, but then seizures started to rapidly change and increase. It was discovered I needed one of the leads replaced, as it had broken off, and my battery had also gone dead.(I had one of the original ones made) I had the next one replaced in December 2019.
The other thing that I think is cool, is my doctor has a PDMS tablet where he can see my data which i send via my computer daily. I place what they call a wand at the placement device area, It collects my brain/RNS data and then I transfer it via the computer every 3-4 hours when possible. (You do get some funny looks when you have this thing held up to your head LOL) So if there is a day I felt something very off or it was a day he was taking a look at my data, he can go to my RNS data and see if it shows anything. At my appointments, we match up my log of where I felt seizures to what the data shows and go from there to change the algorythms and strength/timing of the RNS going off. (The one thing we also learned, it was implanted at the May Clinic in EST, well we now live in CST and or if traveling we have to remember my log could be off)
Overall; considering I was having over 100 on some days, and now I am down to having them about every 3-4 days on/off and half that amount a day. It is HUGELY successful, but my seizures have changed and more debilitating vs before. I still would suggest anyone living with uncontrolled medcated seizures and running out of options to take a look at the RNS System.
Go figure I am 1 in a million as my husband would say, in the study(I am in) I am the only one not controlled, plus on more meds vs before. Needless to say as the dr says I am WELL KNOWN at the annual Epilepsy Conferences, as well as the Mayo Clinic meetings.
Any questions on the RNS device? If you didn't know, Now you know Mondays:)
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