How do I shield my cell phone from my RNS magnet?
For those who have a responsive neurostimulation (RNS) device implanted, how do you shield your cell phone from your RNS magnet, particularly when you carry a purse?
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My apologies I don't know how to adjust the title for this discussion. I was asking about my cell phone, not about myself. My phone autocorrected.
Good Morning @absentsenior !
Since I don't have personal experience with RNS, I don't have much to add this time — but I didn't want to leave you without support! I'd like to bring @caseybach, @lsittll, and @pmracc33186 into the conversation, as they may have some helpful input for your question.
And if I'm not mistaken, your RNS surgery is scheduled for today — sending you all the best energy and positive vibes for a smooth procedure! 🤞💜
Chris
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@santosha I don't mind. Thank you very much for the well wishes. I probably won't be able to post again until tomorrow. My surgery won't be over until this evening.
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2 ReactionsI post this for RNS informational purposes. I am now almost 2 weeks post RNS surgery. Surgery ended up taking 8 hours. Currently, I feel a bit like a fuzzy cracked walnut (lol). I've retained all my awareness and balance since the Surgery and have felt no mood or mental impact and that has been a relief. The idea of someone tiptoeing through my brain has always been a worry. The device has been set to "learning" mode for the first month. At the end of the month, I will see the programming neurologists to have the settings reprogrammed to actively send a pulse to stop my seizures. That visit will be a regular visit every few months. I'm very anxious to see how this process and results turn out.
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3 Reactions@absentsenior Good Afternoon
I'm so happy to come home from my holidays to the news that your RNS surgery went well! 😊 Fingers crossed for great results with your newly implanted RNS! 🤞
@caseybach, @lsittll, and @pmracc33186 — would you mind sharing how you felt in the days and weeks right after your RNS implant? Your firsthand experiences would mean a lot here. Thank you so much for participating!
Chris
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1 Reaction@santosha Strangely enough, my body felt fine and for obvious reasons I had a headache. Not severe. Internaly, I could hear a squishy sound that was very strange. It took me a while to realize it was air that eventually went away. I had a friend stay with me for safety and asked her to pay particular attention to my balance and speech. She never noticed anything out of the ordinary. The hard part was forcing myself to stay down because my body felt fine. I intentionally slowed down mentally. It was frustrating because I couldn't concentrate or focus on more than one thing at a time. I learned to think of my brain as a muscle. When I felt confused or mentally frustrated, I forced myself to stop what I was doing and shut down for a while. That means resting or doing mindless tasks. I'm back at work now with a job that requires a lot of organizing and keeping multiple balls in the air at one time. I take a lot of breaks and use FMLA. Full cognitive and mental function recovery from this surgery can take 6 months. Be patient and FORCE yourself to stop when you feel tired or overwhelmed. Keep a note pad with you at all times. It will keep you sane if you let it be your "remind me" friend. I am very anxious to see the upload results this Friday when the 1st programming is done.
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4 ReactionsHello @absentsenior
Thank you so much for sharing this with such detail — it is incredibly helpful for others who may be considering an RNS or any other implant for epilepsy!
I'm glad you had a trusted friend by your side during those early days after the implant, and that the squishy sound from the air resolved on its own.
Your tip to treat your brain as a muscle that needs rest when fatigued really resonates, and so does the notepad idea. Such a simple tool, and one that has already helped me a lot. To be patient with oneself is so valuable, something I learned the hard way in my own epilepsy journey.
It's wonderful to hear you are already back at work! Reading your post, I got quite curious about what kind of work you do — would you mind sharing?
Wishing you all the best this Friday for your first programming session — please do come back and let me know how it goes! 🙂
Chris
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@santosha i'm a travel agent that specializes in cruising. I'm at clinic now waiting to see my doctor and will get you up-to-date later.
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1 ReactionHi @absentsenior
I hope your appointment yesterday went well!
A travel agent specializing in cruises — how interesting! I haven't been on a cruise myself, and it's something I'd truly love to experience someday. I love the sea and used to sail with my father for a week or two. Such wonderful memories from my adolescence and early adulthood!
Looking forward to hearing how your appointment went!
Have a great weekend!
Chris
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1 Reaction@santosha Get comfortable this may take a while. During my programming appointment, the doctor was very helpful in showing me the graphs indicating seizure activity that also came with timestamps and duration. In addition to that, they indicated that the majority of my seizures were originating on the left side, with a small percentage on the right.
When I started this journey, my seizures originated on the right and gravitated to the left. So they have spread. It appears the majority of my seizures happen during my sleep at night or when I'm tired, and I now understand why I don't feel like I'm getting much rest. They do label them as long seizures. I will be starting briviact tomorrow and we will see if it is effective without turning me into an angry person.
The initial programming was done and it is not something you feel or are aware of happening. I have been very frustrated lately at the confusion in my mind. A mind that sometimes feels full of confetti that i'm trying to see through. I'm trying very hard to be patient with myself. I did send a message to both my surgeon and my neurologist, asking that they share it with the team for future reference. I suggested the notepad I had spoken of earlier. I also suggested that their surgical patients be contacted once a week for the first three weeks to have their questions answered and concerns dealt with so they wouldn't just sit and worry.
I suggested that a neuropsychologist be a part of the team because of that confusion that you go through as your brain heals. It's not a quick process, and it would be helpful to know you're not going nuts. I think it's also important pre surgery for the surgeon to explain to you what to expect. It will never be the same for everybody but you'll at least know that there will be some confusion and issues with your thought process as your brain heals from the trauma, it's been through. It will be a long road forward but at least it is forward.
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