I am looking for anyone that has gone through with the RNS or is in the midst of it?
After many tests, EEGs, Brain Speck Test, my doctor thought that I would be good canidate for the RNS. I did have the VNS implanted in 1999, in the beginning it seemed to be more effective than recently. After talking to several patients who have the RNS, I decided to have the RNS implant. In early October I had my VNS removed, and the RNS implanted. Surgery took about 3 hours, no problems, then afterwards recovery room for about 2 v hours. I then had to spend 3 days after for observation, and followup. I had to stay 1 extra day because I had a little temperature. The surgery didn't hurt, but afterwards I had a mild headache for accouple days.
It seems like as I was starting the calibration procedure it was going fine, other then a seizure once in a while.
I did have a unexpected surprise come up in December though. It seemed like I started having "headaches" which I never have. I told my doctor, I had a CAT scan, he saw something unusual and wanted to admit me. I came in, had several tests, and then a "Spinal Tap". The results showed I had "Bacteria" in my Central Nervous System, and my Brain pressure was increased.
The tests showed I have" Bacteria" in my Central Nervous system. I had the RNS removed the next day, and was treated with "IV Antibiotics" for 2 weeks.
Since my release Feb. 1, 2017 I feel really good. I don't have the RNS or VNS in me now, and have been doing good. The bacteria only shows up in 4% of patients from all different types of implant surgeries. I feel so Blessed to have been watched over closely by God. I've had epilepsy since 12 years, now 57. Also was diagnosed with Tuberous Sclerosis.
I know most RNS surgeries have positive results, but I feel like I should share my experience to help others.
I have the RNS and have had it since 2008. I have not had a seizure since January 2009. However several of my friends still have seizures but the devices helps them a lot and they do not regret getting it implanted.
@A MyEpilepsyTeam Member Thank you for sharing your story. I wish things worked out better for you, but it sounds like you are at peace.
I have had both V N S surgery and R N S surgery first the v n s helped a bit then started having seizures again. Had one where I couldn't talk for a whole day. They told me it was statis epitlepticus. Which I have had 3 other times and was on life support (very scary) mess we're not working well. Then made the decision to have the r n s surgery that was really ruff still feel like the affect of that one from last February. I'm not sure how long it will take to get better or if it will. I am still having seizures daily. It's a hard life but it's the cards were delt
Study it yourself . You have a comp/. or smart phone read the side effects . talk to your Dr. be adamant about your body its your life and your body. you have to take care of yourself. sweetie so find whats right for you. even tho some med may stop u having seizures , it may cause a more severe problem for you ! ask questions Read
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