Neuro Pace and guinea pig

April1811

New
Messages
18
Reaction score
0
Points
0
Big Pharma makes money

Big Pharma make$ drug$, drug$ don't cure only treat the $ymotom$. Doctor$ make money by pre$cribing the drug$ big pharma make$. $o, diet$ don't make money for big pharma or Doctor$, $o they are more or le$$ overlooked or even $hunned by our beloved medical profe$$ional$.
You are darn right in fact my doctor tried to give me more meds. and my seizures were lasting longer than before. As soon as she took me off of the Extra Nuerontin and Zenogran they went from 30 minutes to 10 minutes long. We know who is making the money. It was a lot better on less meds. than more. Also get off of the aspartame and splenda they cause promblems with the anti-depressents. I had floaters in my eyes and depression and within acouple of months of getting off of aspartame they dissappeared. Good Luck.
 

hamatreya

New
Messages
4
Reaction score
0
Points
0
:ponder:
what does BIG PHARMA have to do with Neuropace?

Don't confuse a biotech startup with about 50 employees (neuropace) with BIG PHARMA
 
Messages
50
Reaction score
0
Points
0
I believe that before having any type of surgery I would want it to be around for at least 5 years with a good history. I am prabably going to have the VNS myself. As far as todays patients being guinea pigs read my post and you'll see I agree 100% with that.
 
Messages
190
Reaction score
0
Points
0
I have just had the RNS implanted myself, I was wanting to think about the VNS, but the doctors told me that it would not help due to the type and location of my seizures. It actually wasn't bad, went in on tuesday for the surgery and was discharged on thursday. A little bit of pain, but thats typical of any surgery.

Before making the final decision to do this I did alot of research on it and so far the RNS has been having great results. I am hopeful that it will work for me too. Even though it is a clinical trial, there is alot of external funding available for people that are going to have it done. I actually don't mind being a guinea pig for it as it is something that may just give me my life back
 
Last edited:

Bernard

Your Host
Administrator
Benefactor
Messages
6,611
Reaction score
72
Points
203
I hope it works for you s10. Maybe some day down the road, you can add an entry to the History Book documenting your experience.
 

joan

Stalwart
Messages
469
Reaction score
0
Points
91
Im wishing you well too * And thanking you for all those you may have helped in the future.
Be well,
joan*
 
Messages
190
Reaction score
0
Points
0
Thanks alot everyone. From the info I have gotten the company is not far at all from getting it FDA approved, it has been tested for about 5 years now and they believe possibly next year for approval. I think it will be something that will help alot of people, they have also found that it has had a great success rate on some people with parkinsons and are testing it for that too.
 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
161
They are also using Neurofeedback for Parkinsons.
Do I get to pick which option I would want to try first?
 
Messages
190
Reaction score
0
Points
0
Im not sure how that would go, I know that with the neuropace RNS they offered it to me as an option or otherwise to continue throwing medication at it, so I decided to give it a shot, of course, in my case, I had no other options, the VNS was out of the question due to the area and regular surgery was not an option due to possibly losing speech.
 
Messages
4
Reaction score
0
Points
0
Hi.
I have the Neuropace device in my brain now. I am part of a study in which the device was implanted to see how the device will work for epileptics.
I was having between 15 and 29 seizures each month while taking medication. Now I have none. I know first hand what it is like to have the device and all the information you may want.
 
Last edited by a moderator:

vtsammy

New
Messages
57
Reaction score
0
Points
0
Hi Janie. Did you have any other type of seizures prior to getting the neuropace? Are you still on medication after having the neuropace? Where did you have the surgery done at?
 
Messages
4
Reaction score
0
Points
0
Hi.
I do not understand what you mean by "any other type of seizures". Please be specific so I can understand.
I got the device at Emory in Atlanta GA through a clinical study I am part of. Yes, I am still taking my medicine. In the past no single or combination of medications stopped my seizures (and I have taken a lot of different kinds). Well, my husband and I decided about 6 years ago to start a family. THe medicines I was taking then was working better than any others but it had a high percent for birth defects for babies. Because of that, I am taking only Lamictal. This medicine does not really do good for my seizures but it was the best for my baby. If you want to talk more just email me.
Janie
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,611
Reaction score
72
Points
203
Hi Janie, welcome to the forum. :hello:

Perhaps you could post about your experience in the History Book? Check out the guideline for the forum. Answering the questions there will help others understand your experience.
 
Messages
190
Reaction score
0
Points
0
Janie, I can understand just how you feel. I myself was having seizures almost every day, right now, after the implant of the RNS, I am still averaging about 2-3 a week. I'm currently in the middle of the double blind study portion of it, so I don't know if it is on or off.

I have noticed a bit of a change in my seizures though, some are only simple partial rather than complex partial, and I seem to come right out of all of them now. It is rather weird though to go in for my doctors appointments and having no idea what they are doing or if they are doing anything at all.
 
Messages
190
Reaction score
0
Points
0
Great news on Wednesday, after my most recent adjustments to my RNS, I have had a massive decrease in the frequency of my seizures. Over the past 30 days, 20 of those days were seizure free, a major drop as I used to average at least one a day and multiple ones at night that I was not aware of. The RNS has also been decreasing the intensity of the seizures. I am now able to speak coherently throughout my seizures and if it happens at work am able to put a stop to what I am doing so that I can sit back and let the seizure occur. The docs are continuing to make small changes to the settings, but at this rate things are really looking up.

I am glad that I had this procedure done, as there is very little scarring and my hair covers most of it.
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,611
Reaction score
72
Points
203
That's awesome to hear s10.

:woot:
 
Messages
190
Reaction score
0
Points
0
Thats what I thought too, at least it is great news for anyone that is thinking about having the procedure done, lets people with refractory seizures know that there may still be hope if ineligible for surgery and meds don't control it
 

Meetz1064

Fantastico
Moderator
Messages
3,777
Reaction score
0
Points
0
Yeah for

you s10!!! Things look like they may be on the upswing for you!!! :clap::clap::clap:
 
Top