RNS (Responsive Neurostimulation) Surgery
Latest from Matthew
RNS surgery my thoughts and opinion about how I feel for my seizures
So the RNS surgery only hurt when I did it for a week then I did the second surgery and it only hurt for a week or two. It helped my seizures a lot and completely fixed them. I feel a lot more happy now than I was before I did it, but there is one risk when you do it could cause hallucinations, but for me it did not hurt me because I have had hallucinations for 13 years. It helped my sleep a lot. There are different settings on the RNS and you download your head. It takes 2-3 minutes every day and it tells you how many seizures you have. It was a great surgery
Please do this
Please Pray for the Doctors to say I am seizure free now with my Epilepsy from the RNS surgery so I can cook at the restaurant I work at which is five guys
RNS opinions with me
I do not recommend doing this Surgery In my opinion I have had a lot less fun playing golf
I have felt a lot worse because I can’t breathe as good
I feel like I have had about 10% more seizures
I had to go through the pain of the surgery
It is harder to walk so I feel like I am some what handicapped now
I don’t feel good either unless I eat all day long
And you waste a lot of time downloading your head to get the data
And this Surgery is more then $3000 I say it was a ripoff.
RNS brain surgery
This is my story with it it started out I saw a rainbow when I was scared when I first woke up one morning and I almost canceled the surgery when it was approved with my insurance because I was scared of the first surgery and I did the first and second surgery and I turned the device on earlier today the first surgery was worse the second you stay in the hospital a few days though and today I feel so much better already I feel like I am in Heaven my hands and my fingers feel less stiff like a ball of cotton I feel like I could sleep 7 hours now it feels like God is saying I will never have a seizure ever again and I can scan to see how many seizures I have every time I go to the doctor and see how good I am doing like a EEG but this is permanent besides you have got to replace the device every 10 or 11 years the RNS magnet helps more then the VNS magnets because they are stronger and they work as a team I have done both surgery’s and they both made me feel a lot better I am so thankful I did do it I feel more like a Christian in my heart and I feel more like I will follow Gods will forever so I would do the surgery I’d you have Epilepsy my heart feels less likely to race a lot it feels like my life started brand new again and I have not been feeling this wonderful since I was a baby and I am a 17 year old I am so happily blessed I did this Surgery I will tell you how I sleep tomorrow.
Seizure tips
They get easier in time and don’t let them mess up your life Do keto diet when your a kid works well
Do VNS surgery so you can stop some seizures with a magnet
Pray and trust God and Jesus
Do Fun stuff
To me tonic clonic feel like my brain is telling me a seizure is my fault you need to train yourself that it is not your fault to help the pain of seizures and it feels like you hit your head in your sleep
Chocking seizures feel like poison rising up your belly button to your chest water helps for me and the VNS magnet has helped me have less of them just ignore leg jerks and head jerks because they just tickle and there dangerous but not painful and tell your parent
Some seizures make it where you can’t breathe well just pray for those to stop I feel like a dog painting with that type of seizures.
This is Sad warning
The RNS surgery is good it just has been sad the pain has got worse in time not better it feels like there has been bricks thrown on my head with a wrecking ball crushing my school above my right chin. But it is so cool you can see in time how much the surgery helps and turn the device off if It is making you worse.
Warning with RNS surgery
You probably will have trouble swallowing for a few days.
This is how the second surgery of the RNS was like
It really wasn’t that painful it was just uncomfortable at night Laying down and they have free food and drinks if you get what they bring up and if you don’t like there food you can pick someth Else but you have to pay for it but we had to stay two days and on the 2nd day we stayed all day long before we went to the air bb room
RNS surgery part 2
The surgery is only painful at night when you are laying on a pillow and the IV is a little painful. It’s the same feeling as the first surgery besides when you’re asleep. I would say the first surgery is worse you have to take some pain medicine if you need it. I took like 3 medicines plus Tylenol.
The nurses spoil you giving you fun things to snack on. You have to go a while without walking to go to the bathroom and it hurts to be peeing.
They’re going to wrap the scars up when you do the surgery.
My device was implanted on the right side to hopefully stop all of my seizures. Then you need to go without a month of it being turned on.
How I feel with Epilepsy
A type of seizures for me I call it a choking seizure it feels like a bully poured poison down my throat and it a rising feeling in my chests similar to anxiety. I also have a pinging noise I hear sometime that I think is a seizures because it sometimes makes me feel bad and it is very annoying. My worst type of seizure is a tonic clonic seizures it feels like my brother and family when they get close to me at night it feels like I’m getting blamed for my health problem like it’s my fault. And I also have a type of seizure that feels like CPR like I’m getting crunched to the point I feel choked to death and I have to take I lot of medicine and not over do the caffeine and unhealthy food. I don’t recommend dairy and soy for me leg jerks just tickle a little but they are not painful at the worst they will do is give me a migraine headache. And same feeling with hand jerks and I also have it where I get stiff and my hand starts to shake by itself and my temperature gets colder. I have back to back seizures that I have seizures for hours unless I take the rescue medicine and after two or three days my anger gets bad from the rescue medicine. Sadly I have to go to the Dr a lot and get blood test and stuff like that done and a iv to put me to sleep. For this second Surgery with the RNS I’m very happy I will probably be better. But I’m also nervous I will not get better or get worse. Please be praying for me I need God to help me.
To Help others with RNS surgery
The first RNS surgery was very painful the first day for me after the pain medicine got out of my system but I took some Tylenol to help the pain. After that it wasn’t too bad with the bone marker surgery. It felt similar to pulling the EEG wires out of my head. An EEG is when wires are glued to your head so that is what it felt like. You can’t pick up heavy stuff or play golf or have a hat on for a month. You may be feeling different than how I felt though because your surgery will be a little different.
Buzz cut
Matthew got his buzz cut and is ready for his bone marker surgery.
My Surgery is Approved
I believe both surgery of the RNS will stop all of my seizures please pray for me.
From Matthew this is how I am feeling right now
Should I do the RNS surgery or not it has ruined my week.
Brain Surgery thoughts
Hello MY name is Matthew Alexander FloydI will probably do the RNS brain surgery for my generalized Epilepsy if the insurance will approve it I’m a little scared because I have never done a brain surgery before but I did do the VNS surgery so I have done one surgery only
And EPILEPSY is very hard so please be praying for me I have tried about 2000
Things to fix epilepsy and I have not got better yet sadly I feel like it would be so worth the surgery if it helps but I’m going to be sad 😢 if it makes me worse
I will be doing it at the Nashville TN Vanderbilt Hospital 🏥 Monday then I come back about a week later and do a second part of the RNS surgery because they want me to heal up from the bone marker surgery before I do the second so I need you to Pray for me From Matthew.
About Matthew
Matthew is a 16-year-old with generalized epilepsy, which has not responded to medication. He was diagnosed with Doose Syndrome at the age of 4. His diagnosis was later changed to Lennox-Gastaut Syndrome.
Matthew’s goal is to become a professional golfer, and he has already gotten a hole-in-one. He started this blog because he wanted to work, but epilepsy makes that difficult. He has been blogging regularly since the fall of 2021 and already has over 500 blog posts. He hopes one day to be able to monetize this blog.
Matthew will have an RNS (Responsive Neurostimulation) device implanted targeting the Centromedian Nucleus of the Thalamus.
His surgery will occur at Vanderbilt with Dario Englot, MD, Ph.D. as his surgeon.
Links to RNS News and Research
Responsive neurostimulation of the thalamus in generalized epilepsy:
Could We Generalize Surgical Candidacy Beyond Focal Epilepsy With Neurostimulation? Dario J. Englot, MD, PhD
Four patients with idiopathic generalized epilepsy underwent RNS System implantation in the bilateral centromedian (CM) nucleus region. Patients experienced a 75%-99% reduction in seizure frequency with decreased seizure duration and severity (Engel class IB, IC, IIA, and IIIA) and significantly improved quality of life. Outcomes were durable through at least two years of therapy. (1)