Cranial neurostimulator

1

I just had a cranial neurostimulator implanted after 35 years TN and ATN and failed MVD and gamma knife. There are 3 leads on the face and the battery pack is implanted by my collar bone just under the skin. Has anyone had this? I read several posts about "motor cortex stimulators", but I'm not sure this is the same thing. Anyone know the difference?

2

I have a peripheral neurostimulator. My battery is in my chest, and I have two leads. One goes into my face, and the other into my scalp. I have had mine for almost two years, and it works incredibly well! I would be happy to answer any questions .
Christine

3

I believe the difference is a motor cortex stimulator has the electrodes I planted directly into the brain. A peripheral nerve stimulator has the electrodes just under the skin, along the path of the nerve.
Which type do you have?

4

Christine, do you feel any sensation to your face with this? Was this also a last ditch effort on your part ie failed other things?

5

Susan

I had this device implanted because the MVDS I had failed to relieve the burning, boring of ATN. ( the surgery did relieve the shocks of TN1). As far as the sensation goes, it all depends of which program I am running to the stimulator, and at what intensity. Each lead has four contact points which impact a different area of the nerve( I have all three branches invoved), so i can change the program to address specific areas. If I have the intensity turned up high enough, I will feel the sensation of mild electric current, similar to a “buzzing”. That sensation is a little odd, but not painful. I do have my stim running 24/7, and usually do not feel any sensations at all. Just no pain!

6

Christine. I am trying to find a hospital that will do the PNS for my wife. We live in south Georgia..

Which hospital did you use? Thanks Grecio (David Carter)...



Christine said:

I believe the difference is a motor cortex stimulator has the electrodes I planted directly into the brain. A peripheral nerve stimulator has the electrodes just under the skin, along the path of the nerve.
Which type do you have?
7

Christine. I had the under the skin leads. My doc called it a Cranial NS - said he was having more luck with insurance with this wording. I'm just going on faith that my insurance will cover. I'll cross that bridge later. I've only had it a few weeks, so can't really evaluate the effectiveness yet. I'm excited to hear that yours works well. Encouraging.

8

Christine.

Thanks for the explanation of the difference from "motor cortex NS". Helpful.

9

Susan. I also feel a buzzing along the leads. Not uncomfortable. Of course the buzzing is more intense the higher I have the stimulator. I am having one sensation that is troublesome. When the stimulator is at high levels the muscles around the leads begin to twitch. This is especially uncomfortable around my eye. I'm concerned that when I begin to decrease my medication (which is a big goal for me), I'll need to set the stimulator to even higher levels and this may be an even worse problem. Really scary - of course sometimes anything is better than the pain.

10

David,
Sent you an email. Will call this evening if that’s ok.
Christine

11

Heidi,

Just my experience, but that muscle twitching also happened to me during my trial. The rep told me that was too high! You may need to get some reprogramming, especially when you start coming off the meds. I have gotten new programs twice, and they can make a lot of difference.

12

Thanks Christine.

13

Christine I’m so happy you are doing so well now!

14

Heidi I hope the stimulator is helping you! Does it help with your TN1?

Cindy

15

It seems to help so far. I haven’t started backing off on meds yet. That will be the real test. I start that I about a month. Thanks for asking. Lyn

16

Hi Heidi, I have had my Stimulator in for over a year now. I have a St. Jude with the battery implanted in my chest and leads in my face. It makes all the difference in the world for me. I have several programs that I use, if one of them is turned up too high it is almost painful as you suggested. There are a couple of programs that I really like and a couple I don’t and I don’t use those. I think you will be really pleased as you cut down on your TN meds.
Take care!


Heidi said:
It seems to help so far. I haven't started backing off on meds yet. That will be the real test. I start that I about a month. Thanks for asking. Lyn