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 )
ANS by St Jude
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.