My seizures and Neuropace clinical study
My name is Janie and I just joined last night.
I have been having seizures as long as I can remember. My family thinks that my seizures started after I had meningitis at the age of 5 months old. I always forget what kind of seizures I have. That is bad isn't it? I think it is partial complex. I originally wanted the surgery. I had all the tests required to have a surgery but found out that I was not a candidate for the surgery. So I looked at other treatments. I thought about the VNS but as my doctor said the VNS does not have a good percentage of stopping the seizures and he told me about the study and this device. I decided to try the device instead of the VNS. If the device did not work well for me, it would not be any different than if the VNS did not work well for me. Am I glad I am participating in this study. No seizures finally after 37 years. Yeah!!!!!
Before participating in the clinical study, I was having 15 and more each month. Right now I am taking Lamictal because it is the safest since my husband and I started trying to have a baby (the safest medicine to prevent birth defects). I have tried almost every medicine out there in the past. I have taken the following:
I have only had the device since August of last year. Since this is a study, at first it was a blinded and just last month it was opened so I knew it was turned on. I knew that during the blind stage sometimes the device was turned on since I did not have seizures during that time. Of course I still had some seizures since there were times it was turned off. Since the device was turned off, I have not had any seizures. Whenever it looks as if I am about to have a seizure, the device kicks in does its thing and zaps the possible seizure before it impairs me. My neurosurgeon said that as long as there are no impairments, I can drive. In fact, during the last visit, he told me that I could drive after waiting the time required by law. The normal time for the duration of seizure between the start and end is between 200 millisecond to 1 1/2 seconds. As my doctor says, the seizures last less than a sneeze or a blink of an eye and definitely less than how long people pay attention to their cell phone. I have been sticking to the rules set by the study. There was too much at stake for me to goof around and not take this seriously. I know from the beginning this device may change my life and I was not going to be stupid. And now it has changed my life more than I or even the doctor imagined. I was praying for a decrease and it has stopped my seizures completely. I asked my doctor if he was surprised at how well this device is working and he said that he was very surprised it was working.
I have not had any adverse effects from my surgery to implant the device. The only thing I have (and it is not an adverse effect) is that the area that was cut on my scalp is tender and numb sometimes. It does not hurt though.
The cost of participating in this study is not cheap. Thankfully most of it was covered by my insurance. All I had to pay was about $2,000. It would have cost $119,000 if not for the insurance. There are other costs (time off from work, and gas) that are incurred by the study. Right after the surgery, I had to see my doctor every week for three months. Then I saw him every other week for two months. Then I saw him every months for two months and now I only have to see him every three months.
I am very glad this is working for me and I can hardly wait until I can drive again. It is not that I will jump in my car everyday, but the fact that I can if I want to is amazing. As y'all know that was not an option before. I would love to hear from other people have this device also so we can "compare" notes.
Thanks for sharing your story Janie. Nice to see that you had great results with the RNS.
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.
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