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June15th Anniversary of when stitches came out of my RNS implant in 2017 & June 1st Mayo update


 

Hard to believe it's been now officially 5 years since our family's journey began with my RNS Implant device.


Below you will see this was the day the stitches were removed. On this day my Mayo Doc had very high hopes that come that next Mayo visit in August 2017, I would be reduced from 4 medications to hopefully 1and adjust my RNS algorithm based on the findings during my #Glitch activity.

Come February 2019 as you all have learned that is when my Mayo Doc and my wonderfully supportive husband decided it was time for me to medically retire & focus on my health.


Things had been a roller coaster and they both agreed this was my chance to see much improvement. Against my will as you all know I am now on medical disability. We came to find out the original RNS battery implanted was on over drive and needed replaced. Hence why the #Glitches were getting much worse, so they thought to be key reason, So come December 2019, I went through this surgery again and had the battery replaced all while we prepared for our move o FL.


FAST FORWARD June 1st, 2022


Blessed with family living now living close in FL, Brent drove me straight from a summer baseball tournaement for Broc, to what we now call our Mayo meeting point in Tallahassee. Wendy's, DQ, gas station....usually depening on who is in the vehicle makes the call :) This time my sister (Thanks Pink), was able to meet us and drive me onto my folks new place moving in progress to Saint Augustine. Much closer for my dad's job (long drives back to Fleming Island, were starting to take a toll), and next to the beach for my mom. She said it would also provide me relaxation when I come for my Mayo visits, listening to the waves, a dip in the pool (which I can only do supervised in shallow waters, with a jog back and forth. Those with a #Glitch if their own will understand the safety factor in this...please NEVER swim or be under water alone)


Doc visit day came along with my RNS Engineer and I could tell as soon as they walked in the room it was not good news to hear or as my Doc would say shaking his head or head in his palm....Marissa I was getting so excited for better results from your last visit and oh my what has beeen going on. (Oh my apologies, you have mom with you today, hi mom)

Oh Va you continue to amaze me with your smile, and how I know Brent and your young men support you just via your Mayo portsl with intellligent detailed questions, and yet your case becomes more and more complex and upsets me because we have become like family, as much as I amm sure it is all of you. Please go through your #Glitch log, so I can see some things going on during certain dates. So we did and some did show a week of storms/tornandos around us, for whatever reason we have learned I have become a weather warning projector because it is a trigger for my #Glitches. (Maybe I should be the meteorologist in place of the actual weather stated, because like it or not, I am usually right 8/10 times a storm is on its way)

On some days even a week at a time my #Glitches were happening non-stop, maybe not as intense at one time.(Higher risk for SUDEP) But I would have a few severe ones followed by mini ones and the meds along with the RNS were not stopping them. I even had in my log my funny but not so funny story of going out on my Bday dinner with Broc and Brent and telling the person table for 2 (I was stuttering so you knew I wasn't already doing well, Broc was standing next to me and I guess Brent was holding me up from my back....so of course still running joke who is going to be left out the next time.). If nothing else it gave all of us in the room a chance to laugh before we began the process of what would be done.


Starting back from day 1 from a different view point we are trying the below with hope, courage, and strength


ok going to try and explain this....so hopefully it makes some sense. Picture my right and left temopral lobes having each of their electrodes stemming to each of them with lines on them like a ruler. (due to my independent bitemporal onset focal epilepsy)

My right side until now has always been almost controlled, but my left has not. So there has always been a stronger current going to my left lobe and if you are on a ruler you have markings 1 inch/2 inch/3 inch/ 4inch for example. Ok, have that ruler markings in your head now in front of you? So far we have always gone with (--++) to each lobe. Now we are stemming (+--+). So think of those positive and negative charges coming from each area on the ruler on each side of the lobes. So as the doc said we are stimuluating between the 4 electrodes, vs where before it was the first 2 contacts of the lob, with increased amps once again. They also based on the pattern have it firing off at times based on the data a #Glitch "normally" might occur during a certain time of day automatically. In place of letting the RNS just set off when it starts to detect a #Glitch starting. I now have both occurring.

We are trying this for a month to see if anything happens that is very noticiable good or bad, If it is going very bad, my RNS Engineer we meet me here locally with a nuerologist to have it changed right away, and alos beging to taper me off my Briviact meds. (He did not want to change any meds at the same time of RNS changes, because we want to see what is the actual cause of me rverting backwards.


CLEAR AS MUD RIGHT, YEAH ME TOO...I JUST GO WITH IT...WHAT HAVE IT GOT TO LOSE AT THIS POINT..........


August what will come?


Based on the month of June, if changes are made or not will decide a lot for my 3 month check up. It could me a hospitalization with infusions due to the possibility my Auto-Immune GAD65 #Glitches making my other #Glitch types worse. (Currently a study is being done on this type, praying of good outcomes)


NO MATTER WHAT HAPPENS BY THE END OF JUNE OR BY AUGUST I KNOW I HAVE MY 3 MEN ALWAYS BY MY SIDE (plus many family and friends...truly blessed)





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diana
Jun 17, 2022

I appreciate the details and the update. I pray these next steps get you feeling better. I can’t believe it’s been five years!


Thank you for sharing this journey and being transparent about your challenges. Proud of your courage and your ability to find gratitude for the love and support surrounding you💜

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