I decided to start a tread here about this topic .
I have been contacted by quite a few others who are faced with this as an option , and I wish it were easier for them all to find some info about this.
I believe I am the first in the U.S.A. to try and then have permanent implant
of a PENS for face pain,T.N.(A.D.). I had my surgery in July 2002 . I have been and still very very happy with out any trouble with my PENS or the battery. I have read and been along side of so many others who have gone threw an MVD or Gamma and PENS or Pain Pump becomes the last option . Since getting my Stimulator I have tried to help others going threw the trail and implant of this type of Stimulator .

I want to go over the different names this type of stimulation is called.

It is called PENS which is Peripheral Electronic Nerve Stimulator

It is called SCS Spine Cord Stimulator

It is called a Neuro Stimulator

ALL OF THESE THINGS ARE THE SAME !!

It is NOT approved by the Gov yet for treatment of face pain. T.N or A.D. etc and is still considered experimental / off market use of SCS.
Which in part I think is why it is the last option. Maybe that will change . Maybe someday others wont have to claw their way threw so much pain so many meds and failed surgeries before they are offered to have a trail of the Stimulator.
The biggest best thing about SCS is you have a trail before you have the permanent implant surgery. You know if it is going work well , you know if the stim will help you as soon as you have the trial period. Most times you know right away as soon as it is turned on . Most others I have been in touch with shared they knew right away and cried a little . The first thing I dd was smile without so much pain.
You are awake during most of the surgery and it is a same day surgery also. Both for the trail and the permanent implant of the stim...go in and go home the same day. You are awake so you can help the Doctors know where the leads feel best and are helping the most .
For the trail there will be tiny wires coming out of you and they are taped tight to the skin and covered to avoid chance of infection. You also have a little battery which is in a small case like a cell phone case . You wear that either on your waist or sometimes others have said they had their battery pouch with band / belt/ under arm by bra line or upper chest. .A connecting wire or adapter connects the battery to the stim device or the leads if you will. Almost like plugging in to charge your cell phone. You cannot wash hair or get the area wet during this trial time. They turn the device on and show you how to handle the battery and such then you have your trial time with the stimulator. I find it seems to vary by the Docotrs and the reps of which ever maker of the stim is used. From 3 days up to 2 weeks.

I will share the makers I know of that make this device but I am sure they are a few others and new companies who make simulators that I have not mentioned too.

Medtronics ( I have Medtronics )
Biotronics
ANS by St Jude
Boston Scientific
-------

They place leads and need you awake to be able to tell them if and when you feel the stimulation. next thing you know you are out of surgery and on way home.
In most Cases YOU WILL KNOW RIGHT AWAY if the SCS/PENS is going to help. You Can feel it right away and within a few days the affects may improve to reach further in the painful area.
MY SCS is for my lower right trig nerve also called V-3 . So I only have 1 lead .
Others have leads to all V-1, V-2 , V-3 and yet others have Leads to both sides because they have bi-lat .
The SCS/PENS surgery is not evasive and not major surgery like an MVD or anything like that at all.
I wish Doctors would let others try this before sending them off to have a motor cortex or heck even before they do a 2ed or 3ed MVD. but I am not a pro I am just a normal T.N. person and Doctors I am sure have reasons for 2 and 3 and 4 MVDS Just Hurts me to hear after that many end up with A.D. .
I have AD I got from accident back in '99 I have steel plated on both sides of lower jaw and my lower right T.N nerve snapped and the plate is close to that area. I have had my SCS/PENS since July of 2002 .I have not any any issues , the lead has never broken ..it has slipped a teeny tiny bit but the scar tissue around the lead is and has been holding it steady. I have a battery that DOSE NOT recharge... now most are the smaller recharge type battery AND they use them almost always now. The SCS saved my life when nothing else could help...maybe it can help you too.

I will slowly add more but wanted to get this started and posted .
If I can help or anyone has questions please post , or let me know.
PEACE
BMW

Thanks for this information hun xxxxxxxx

Hi, thanks so much for posting that information, I was confused, now I'm not!

Tina,
I am going to tell my story from the beginning of my life as it changed in March of 2009 until today. That is going to take some time to get done. But for today I want to share with you what I posted on another neuro type web site for all the wonderful people who come to read your blogs. I feel everyone who is burden with this afflicted should read. God Bless You and looking forward to you and I together help others.

My dear friend Tina,

To all of you reading this thread, Tina is the one that came to my aid during the worst time of my life. I had posted something that said " I can't live any longer with this pain" The AD pain had taken over my entire life. The only thing I could do to get away from the pain was to sleep.

Tina, sent me a PM and told me her story. Needless to say, my hopes, my prayers, my faith, my energy, my life went into 2nd gear. There is someone out there that has an answer.

My neurologist mentioned that there was a procedure out there when nothing else is left to do. He wanted to try more and different meds. I knew that would not help. I was on all of them for the TN attacks and they did not help.

After Tina contacted me, I went back to my neurologist to get more info about it and did he know a doc who could do it. He said yes and set up an appointment for me. While waiting for the appointment, I was on the phone daily with Tina to learn more. I was like a little kid who first found out about candy. I wanted more and more information. It just seemed to simple of a fix. It sounded like a dream that any minute would be a nightmare. I could not understand how was it that Tina and her Doctor had the secret and all these years and months no one else that heard of it. So, I ignored all the " wrong information or bad information " that I was hearing and reading.
Finally the day comes to go see Dr. Miracle. He, explained like Tina, the procedure. I asked him where all this wrong information was coming from: ie: it doesn't work, you can't use it for v3, the surgery hurts and on top of it you are awake!! he set me straight. He said he would not do it if it did not work. In fact he will not put in the permanent unless I get 50% relief. It was a go for me. No questions asked except " how soon can we do it"

Because it is still experimental, insurance companies are really tuff to get approved. The Doctor is your best advocate it getting it approved faster. All my medical records were sent and a letter stating that my AD was extremely severe. I was approved in 2 days. Some patients do wait a much longer time.

Tina, I can't express how helpful you were to getting me where I am today. I am anxious for the two of us to work together to get help for so many people inflicted with these conditions. TN, GN, ON, AD, Neuropathic Pain, etc. There is no reason for so many people to go to dentists, ENT'S, TMJ Docs,etc.

For those of you that are reading and following my post and Tina's posts, please contact us and we will get you our stories and maybe we can be of some help and some hope. Tina's blog is on NeuroTalk. You can find her under the blog name "Burntmarshmellow"

You can also email me direct and I will be happy to get right back to you. If 8 years ago it helped Tina for her v3 pain.....it can help a lot more people who are on this site. We will be watching for members who are crying out in the wilderness and be there for your support and encouragement.

My trial is now over. It was bitter sweet. I wanted the wires out, I wanted to wash my hair, I wanted to stop hauling around the generator box. I was excited .....but only for about 1/2 of a minute. He took them out ( no pain in taking them out ) and I said " loudly" put them back. I hurt. The pain came back right away. Now I sit and wait each day for the phone to ring to set up the surgery date.

Thanks again Tina. Let's you and I work together to get the good news out.

Love you
Cheryl

Thank you SO much for sharing your story, Cheryl!
and BMW has been SUCH a huge help in getting this info out to those who no doubt feel they have no options left!

If/when folks come here to NT looking for help and advice, I will point them to your posts! This is priceless!

I will certainly be praying for a quick response from your medical team to get your permanent implant! The waiting is always the hardest part!
Remind folks to be persistent with the office personnel in getting these appointments lined up. Also in checking with your insurance.... Every minute counts! People who do not suffer pain don't realize how important this is to us!!

God Bless
Caring
Rae

Yea Cheryl- You worked up the courage to post with God's help and Burntmarshmallow's urging, now you are here!! Please do feel welcome in your sharing of even more for all of those among us with face pain/T.N. You can do it!!

May your permanent solution come through SOON, that is spelled N-O-W!

Blessings on you for sharing as you have,
ASAP [as you told me],
Mark56

I just talked to my Neurosurgeon and he is setting this up for me too. Thank you for all of the information.

anyone have an idea for burning lips, ay tricks??? gum helps with mouth, and klonopin helps.....but the lips are tricky!! any ticks for the mouth also!!! thanks!!!!! very scared!!!!

Hi Tina, I said I would respond so here I am. Many of you may not know me. I haven't posted here for several years. I frequent Brain Talk. I have bilateral TN. I've had it for 18 years. I've had an MVD on both sides, one successful for 9 years, one unsuccessful. I had Gamma Knife on the unsuccessful side. Like all of you, I've been on many many different drugs including the opiates which barely touched the surface. I didn't know what to do anymore as I couldn't live with the pain. A strand of hair would send me into tears. I finally found a dr. that would change my life forever and I didn't have to travel out of the state where I lived. We tried a few different cocktails without success. My dr suggested we try stimulation. The first stimulator I tried was a spinal stimulator. We believed this would work, the trial worked just fine. After the real battery was implanted and the leads were implanted into the spine it just didn't work. The leads had to be implanted so far up into the vertabrea to hit the right nerves that the leads moved. Then with the hospitals approval, since I would be the first patient to have the implant for this, we tried the PENS. Peripheral Neuro Stimulator. We did a trial period of 4 days to see if this would help with the pain. It did so we went ahead with the implant. The battery is implanted under my left arm along my bra line. The battery is about the size of a silver dollar but thicker. You can't even see it. It is rechargable. I have the control of turning it off or on, up or down depending on how much pain I'm in. About a year later, the pain on the right side started coming back. We made a decision at that time to go ahead implant another stimulator since I've had such a great success with the other one. Insurance fought me a bit on this one, but we won. I was asleep for the entire procedure on both of these. It's usually only the spinal stimulation that you're asleep and awake so they can tell which nerves they are stimulating. My leads go up my back, into the back of my head, behind my ear and into my cheek and one over the upper teeth. Each lead has 8 electrodes on it. They have literally saved my life.

Don't get me wrong. I still take a few meds. I talk trileptal, topamax and a very low dose of trileptal. This doesn't mean the same for you. I was on a heavy dose of narcotics before the the implant to the left side. The stimulator isn't designed to give you a 100% pain free life. I have several days where I am pain free because of the stimulation and the meds. In the winter or when the weather is not so good, my pain levels go up. This is what the stimulator is for. It is such a relief. I've had my stimulators now for about 6 years and I still see the same dr. I will NEVER see another dr. for my TN. He is a Pain Management Specialst. This is it in a nut shell. Just be sure that your dr. has done this before and knows where to run the leads to get the correct stimulation to block the pain. The stimulation sends a message to the brain basically telling it that there isn't pain there. So where you're having an attack or a bad attack, it blocks a lot of those signal or mis-fires.

Please feel free to ask me any questions you might have.

Regards,

Kim

Kim,
you are amazing! This testimony is so insightful and inspiring! I wish I could jump thru this screen and hug you!

Please know how appreciated you are!!
Thank you for sharing this with this wonderful community! This world needs more people like you! People REALLY NEED to hear these testimonies that come straight from the patients!
A person can do all the searching on the web they want, but nothing compares to a heartfelt post such as this!

God Bless You!
Rae