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Old 06-06-2010, 01:15 PM   #1
Burntmarshmallow
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Arrow Stimulation... PENS / SCS for face pain, AD , T.N.

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

Last edited by Burntmarshmallow; 06-06-2010 at 01:35 PM.
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Old 06-06-2010, 06:55 PM   #2
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Quote:
Originally Posted by Burntmarshmallow View Post
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
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Old 06-06-2010, 07:40 PM   #3
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Default clearing of confusion

Hi, thanks so much for posting that information, I was confused, now I'm not!
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Old 06-07-2010, 01:21 AM   #4
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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
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Old 06-07-2010, 07:36 AM   #5
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Heart Thank you for that!!

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
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Old 06-07-2010, 02:01 PM   #6
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Thumbs up Cheryl- You Did It!!

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
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Old 06-07-2010, 02:58 PM   #7
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I am adding some pictures of where Cheryl trail leads were.
She had one to the upper V-1 and then
one lead for V-2 and then
the 3ed lead to V-3 (lower) like I have .
They are out now ,the trail was very successful
So together we wait Like Mark for the permanent implant date. waiting waiting
Thank You for sharing and helping others the way you are Cheryl.
PEACE
BMW
Attached Thumbnails
Stimulation... PENS / SCS  for face pain, AD , T.N.-img_1148-jpg   Stimulation... PENS / SCS  for face pain, AD , T.N.-photo-2010-05-28-12-31-jpg   Stimulation... PENS / SCS  for face pain, AD , T.N.-photo-2010-05-28-12-35-jpg  

Last edited by Burntmarshmallow; 06-07-2010 at 04:34 PM.
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Old 06-07-2010, 10:18 PM   #8
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I thought it might help to have a "display" pic that shows the Trigeminal nerve and its 3 branches and one that is shaded with color to show where the area is that each branch affect and where the pain would be for each branch also the shaded area would represent the area a lead would help if it were placed for a certain branch. . so we have the T.N. nerve and then it branches into 3 sections the upper =V1
mid=V2
and lower =V3
Cheryl had leads to each of the branches.
I have 1 lead to my lower right (V-3)
I hope this helps show/explane things better sometimes it helps to see it even tho we are all sure feeling it.
Now Cheryl when your ready and feel up to it you need to share about your gamma and MVD and stuff you went threw before you had this trail . You are helping so many others by sharing and I am here for you if you need help or wanna vent. I know how much pain your in right now but sharing can help heal you . it helps me to share and you are doing great. I know others are reading this and finding ti helpful even if they dont reply ... you are helping!!!
Hugs Cheryl.
Attached Thumbnails
Stimulation... PENS / SCS  for face pain, AD , T.N.-trigeminal-nerve-6-jpg   Stimulation... PENS / SCS  for face pain, AD , T.N.-v2-worst-pain-jpg   Stimulation... PENS / SCS  for face pain, AD , T.N.-trigeminal-nerve-5-jpg  
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Old 06-08-2010, 11:01 AM   #9
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Default Thank you Cheryl and BMW for showing pictures

Quote:
Originally Posted by Burntmarshmallow View Post
I am adding some pictures of where Cheryl trail leads were.
She had one to the upper V-1 and then
one lead for V-2 and then
the 3ed lead to V-3 (lower) like I have .
They are out now ,the trail was very successful
So together we wait Like Mark for the permanent implant date. waiting waiting
Thank You for sharing and helping others the way you are Cheryl.
PEACE
BMW
For your willingness and bravery in showing pictures to illustrate for others the Trial in process, we thank you two. Cheryl, it is so helpful to many who contemplate this procedure that you would allow the posting of the pictures!! Yea!

May your permanent be scheduled soon!
ASAP,
Mark56
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Old 06-08-2010, 10:54 PM   #10
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Default Why is this so difficult

Why is it so difficult to share our story of the pain? Maybe because you want so to forget it? Or like in so many cases, no one really believes you because with TN you look fine. I don't know, but what is important that we do is to help others with their pain and hopefully some encouragement. With continued luck that is how my story will end.
In March 2009, I had my first horrific pain in my face. The pain is more than anyone can explain. The TN attacks occur on one side of your face. It feels like someone is stabbing you with a hot fireplace poker over and over again and will not stop. It is endless. My attacks would last from 5 minutes to 35 minutes. You never knew when it was going to happen. Comes just out of the blue. I was having between 10 to 15 attacks a day. It was frightening.
In June 2009 I had the Gamma Knife Surgery. During that month, I only had 8 attacks the entire month and 4 of them were not as painful. Exactly 1 month later I was hit from the rear while waiting for a red light. I got hit. On the way to the hospital I had an attack. The attacks increased to where they were prior to the gamma knife and worse.
Starting in October, along with all the attacks, my face starting burning. Inside and out. The burning pain on the inside was my tongue, pallet, gums, teeth, entire cheek. Burning like you can never imagine. On the outside, from the forehead all the way to the jaw. Lips, cheek, nose, eye.....just everywhere.
This pain is 24/7.NEVER NEVER any relief.
Well, by this time I really found no reason to be around. I was no good to anyone. I was in constant pain and this is no way to live.
I did keep going to the doctor's. Maybe one more of the many many pills that I took would do the trick. All they did was add to the misery. Made me dizzy, sick, double vision and actually a mess of a person.
My neurosurgeon said that he felt he could help me with the TN attacks by doing the MVD surgery. He did say that it would not get rid of the constant burning pain. He diagnosed it at AD ( anesthesia\ dolorosa).
In January 2010, I had the MVD surgery and it was a complete success. I have yet to have an attack. Of course, I am thrilled about that.
The surgeon was correct, the AD was still there and would say that it was worse. The surgeon can't help but cause damage to the nerve while taking the vessel or artery off of the nerve. My vessel was wrapped around the nerve and also like glued to it.
I was put again on many anti-convulsant meds that again did not good. I went to a pain management doctor as I felt that was all I could do.
I was put on 75 mg of Fentanyl Patch and percocet. At is time I was taking 20mg of Percocet every 2 to 3 hours. Much more than anyone should ever take. Along with the fentanyl and that amount they still only took a tiny bit of pain away. I really do not think it takes any pain away....it just calms you down a little.
All I had left was to continue to post pleadings for help on the various internet sites for help. Only by the grace of God, Tina....Burntmarshmello....read one of my posts and answered it. She gave me some hope telling about the stimulator. I asked if I could call her as I was desperate. As some of you that know her....she is wonderful in helping people like you and me.
My neurologist knew of a Dr. here in Denver that did these kind of procedures. I went to see him and he said "yes" it could help. He did inform me, as Tina did, that it is still experimental and could have problems with the insurance co. Well, again, only by the grace of God, I was approved in 2 days.
All patients must have a trail period to see if the stimulator will help. My Dr. said for 10 to 14 days. My stimulator was placed on May 24, 2010. You can see pictures of my bionic woman look under Tina's blog above. I told her to put them up as I felt it could help new people actually see what the procedure looks like when you are done. Yes, I was anxious to get done with the trial. All those wires, and tv cables, etc. were a bother at times.
Then the big day.....take them out. It was bitter sweet. The Doc said.....do you feel like you are getting any relief? I said " are you kidding" I love it. All the pain is not gone; but enough that I feel human again and actually can laugh and go out with my family. He took them out. 1/2 of a minute later I said, " put them back in". The pain was again there.
So.....here I am at the end of the story .....so far. I have to wait 1 month before the permanent placement of the stimulator is put in. It is the same procedure; but will worm the wires down the neck into the little generator box that will be implanted into my chest. I will update you all with pictures and all when that occurs.
I hope the pictures of my procedure will help you get some visual understanding. Also, I had Tina put up the diagrams of the pain that we have that have TN and AD. Please talk to your Dr's about this procedure.
Again, thanks to Tina and all that have supported me, I am on the road to having much less pain.
ASAP
Cheryl
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