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

Thanks for this information hun :) xxxxxxxx:grouphug:

clearing of confusion
 

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 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
:hug::hug::grouphug:

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 :) :grouphug:

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. :hug:
PEACE
BMW

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.

Thank you Cheryl and BMW for showing pictures
 

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! :You-Rock:

May your permanent be scheduled soon!
ASAP, :smileypray:
Mark56 :)

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

Thank you Cheryl....
 

http://dl5.glitter-graphics.net/pub/...gzl1zjzk8k.gif You can count on the fact that the support here is neverending!!

Thank you so VERY much for sharing your story! This will help more people than any of us probably realize!

God Bless you for this!
We will be by your side as you wait for your surgery and beyond....
Many people will be inspired by this!

Praying for You!
Rae
:hug::grouphug:

Cheryl needs to take a break from the comp until she has her final scs implanted she is having allot of pain and eye issues ...but I will post updates on her as we wait and as she has the surgery. Blessings and many thanks for the well wishes and prayers.
PEACE
BMW

Prayers
 

Thank you BMW, and do let her know she is in my daily prayers.
Peace,
Mark56 :hug:

I will do just that Mark.
I really hope others that read this will post questions or something. I am glad Super :hug: and Bayley :hug: posted . I think I will "try to hunt up some old contacts who have had this implant for Bi Lat and other face pains and maybe they will chime in for a one time showing sorta speak...
I see my meanie ostrich hasn't scared the approval along any faster for you..I guess maybe I will send them a a pie and try to sweet talk them into hurrying things up for you lol. :grouphug:
PEACE
BMW

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

Thank You SO MUCH for posting this!
 

http://dl2.glitter-graphics.net/pub/...u6zb0n6sdz.gif

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

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
:grouphug:

KIM Thank You .You did a perfect sharing.. posting of your story . . I so hard pray and hope the goodness you shared by doing this is returned to you and those you care for and love..returned 10 fold back onto and into your life .
I have others coming to share their PNS stories may be a bit of time but I am blessed you are the first one of my "old contacts" to respond. Thanks a zillion Kim. :hug:
Now get back to it and keep living your life. enjoy it and may it be blessed in many more ways then one.
PEACE
Tina

Thank you Kim
 

Hi Kim, and THANK YOU for joining in and posting your experience for others to read, learn, and shape their experiences. You blessed us all! Oh, and by the way, that is a vey nice photo of our state flower!

Wonderful days to you,
Mark56 :)

Many have asked "well what kind of Doctor do I need to see???
so thought it good info to post .
For most of us who have PNS /Stimulator it has been our pain management Doctors that do this type of surgery for a.d. and face pain . I have medtroncs device ..To help others in the past I have called that company and they gave me a link of Doctors that do medtronics stimulators in each area of that certain state . From there I have to call each Doctor or pain clinic then one would have to get apt for consult and such on their end .
I am guessing that I could do that with each company biotronics, ANS by St Jude, Boston scientific etc . Others have gotten the recommendation and this option by their Neuro . For most of the ones I have had contact with it has been the Pain management Doc . You just need to find a pain management specialist or Doc that deals with stimulator / S.C.S each doctor usually has their own company they use Medtronics Ans. Boston scientific ..etc

You Need to Remember this type of implant PNS/ Neuro Stim... DOSE NOT MAKE YOU PAIN FREE!!!!
It just helps you control the horrible bad heavy pain. It knocks it down to a lower level one you can better handle and live a more productive less pain kind of day.
WE still have our pain!! And still have bad days . This stimulator just mixes the signal and kinda turns part of it to static before it races back to the brain to feed the pain monster.
Hope this helps
:grouphug:
PEACE
BMW

Well said Tina
 

Tina that was a good post:I-Agree::Good-Post:, filled with wisdom for the approach to pain management through use of neuro stim; emphasis on pain management. Would that there were a neuro switch to rid us of pain, but it is not a reality in our century. Pain management through a combination of stim and meds which may even reduce the need for opiates may allow so many of us to regain some of what we may have known as productive pre-pain lives. This is my hope for all who are allowed to take the neuro stim path.

Prayers for all, :smileypray::grouphug:
Mark56

I guess I will call this -The other side - as I wish to bring up the worries warnings and situations I have found others in and what I have "seen"
( threw written word and phone not in person) what I have seen others have to go threw.


First I would say Big worry about Neuro Stim / PNS surgery is INFECTIONS

right after surgery at the implant sites where the leads and battery are, It is important to keep these areas clean covered and dry follow all instructions by the reps and your Doc. Also staying healthy and fending off the flu and cold any sinus infection is VERY important! I know of others who have gotten infection and it travels towards leads and such causing the whole Stim leads and all to be removed to prevent any further risk of health and also risk to the unit itself. after the infection was cleared up they have had re-implant of Neuro stim / PNS and are doing GREAT!

I have a friend who is awaiting her re implant and damn it is hard this waiting and this whole extra weight of the infection , Trust me if you can avoid it DO IT AT ALL COST. It is NOT Fun to go threw what I have seen others go threw.besides the pain this includes having IV feed anti biotic every few hours all day and night .Yet at same time it is so very awesome when at last the re-implant is a go and they find the light again get some of their life back.


Another Big worry / risk is lead migration or lead dislodgement .Just like it sounds the leads moving or slipping out of the placement area. .Most times they can go in and readjust the lead and secure them . other times this is not possible as doing this may cause more damage. It depends on the situation, the person and where the lead has been placed and where it migrated to. etc.
I myself now worry about tasers and such .not that I am in trouble or am in situation where I would get tased by anyone.. but it is just something I DO NOT want to happen.
I have no trouble flying I have a card that states I have a medical implanted device I show when I need to go threw metal decors and security. flying has never caused me any issues as far as pressure ..I have the normal ear pop thing but it is noting different then a normal person deals with chewing gum and yawning help. I take Aspirin as I do get head aches with pressure change from flying..driving in the mountains and always pressure change with the weather.
I dont like to be outside when lighting storms are passing but most of us have been taught by good ol mom not to play in thunder storms.lol

also I can NOT have an MRI

here are a couple other warning for the neuro stim/PNS That I got when I had my device implanted.


Warning -- Sources of strong electromagnetic interference (eg, defibrillation, diathermy, electrocautery, MRI, RF ablation, and therapeutic ultrasound) can interact with the neurostimulation system, resulting in serious patient injury or death. These and other sources of EMI can also result in system damage, operational changes to the neurostimulator or unexpected changes in stimulation. Rupture or piercing of the neurostimulator can result in severe burns. An implanted cardiac device (eg, pacemaker, defibrillator) may damage a neurostimulator, and the electrical pulses from the neurostimulator may result in an inappropriate response of the cardiac device.



. Patients should not scuba dive below 10 meters of water or enter hyperbaric chambers above 2.0 atmosphere absolute (ATA). Electromagnetic interference, postural changes, and other activities may cause shocking or jolting.



so these are some of the risks and worries or... "The other side of things" .

Every surgery has risks I wanted to mention some here because in reality it is not always lolly pops and sugar drops . some have had the trail and it didn't help them for what ever reason and while they are sitting there they have to look at me and others like me who have had success with this . I look back and will NEVER FORGET them I have to show both sides. because that is the way things really are. I myself have never had any issue with infection or any problem with my Neuro stim / PNS .

PEACE

BMW

Possibly a good idea to share some links so one can see what the neuro stim looks like I DO NOT PROMOTE ANY ONE COMPANY OVER ANOTHER !! Nor do I promote any Doctor over another ! tho I have some Doc's lower on the list :(

It is the general Idea of neruo stim / PNS that I am fan of. I hope to provide some info about it and also hope others will share and ask questions and for support .
PEACE
BMW
the links ----
Boston Scientific
http://www.bostonscientific-internat...vedForMedProfs

St Jude
http://www.sjmneuropro.com/Products/...PG-System.aspx
St Jude mini
http://www.sjmneuropro.com/Products/...PG-System.aspx

Medtronic

http://www.medtronic.com/your-health...ator/index.htm

Hello everyone
 

Thought I would stop by and say hello. Tina is doing a great job of keeping you guys up to date with my journey through the stimulator. That is good as I have a difficult time concentrating due to this horrific burning pain. The inside and outside of my face is actually on fire. Can't wait for the surgery date for the stimulator. Boy, do I miss that thing. As much as I hated all the wires tugging on my face, the cables all getting tangled up, and always dropping the generator ( ouch ). So, to all you fine friends, have a good week and take care of your self.
Love to all,
Cheryl

Hi Cheryl
 

Hello Cheryl! Glad you are feeling at least well enough to share an update! All hope and prayers that your date for permanent implant comes through soon! That burning fire is so difficult to bear. May yours be near to finished... forever... and may that perm implant do the job for you wonderfully!

ASAP, :smileypray:
Mark56 :)

As I "talk" with others and still others having trial for PNS/Neuro Stim and others awaiting Re-implant ...My info about the process and some worries and warnings may and probably will change. It is not my intent to mislead or have "the golden rules "sorta speak.
Please remember that mine was way back in 2002 and since then , the devices have gotten smaller and more advanced also too each Doctor and company have their own way of doing this . So please forgive if some contradiction come up..I guess that is what one might call advancement or higher tech..then when mine was done. THANK YOU for understanding .

Cheryl :hug: is having MRI today. She is claustrophobic and the worry of this has made her pain flare like an angry bull dog. Sending positive energy and calm thoughts to you Cheryl.
nothing much else just a whole bunch of waiting and praying but honestly .....too much waiting.. :rolleyes:
PEACE
BMW

edit to say wonder that I dont really care for the I thing and with out all of the Yous that have been there and here for me.. This thread would not be. It is not I that makes this thread it is WE .
:grouphug:

How Blessed We Are
 

You see, BMW, we are Blessed, all are Blessed according to the sharing, the caring, the uplifiting spirit of this very special place. Blessed. You bring reality to the masses who need to know the truth of alternatives to pain management. For your willingness I am ever grateful. You have been among ALL who reach out to give. You are a giver, and in this we all are blessed. Now to follow examples of giving we know in truth and urging hope as well brings us to a good venue of comfort.

Perhaps we may all reach a bit more wholeness as we journey on this path seeking one therapy or another. None ever know whether success will be the reward at path's end until finally it is reached, and funny thing, the path never does seem to end, does it? There are those in these threads who experience frustration, joy, hope, dissappointment, and more, but we push on. Helping one another as you wisely pointed out, WE become givers of all of this together. Thus is the experience of NeuroTalk enhanced, the coming more richly rewarding. I am glad You and All together form the We who are NeuroTalk. This is one of those rewards on the life path.

I pray Calewark did well in her MRI today. I knew not it was occurring, and will send her a hug. Truly, I hope for her there is light in the form of permission to proceed with permanent solutions for her pain profile as this testing and the results of the Trial are reviewed. She has been waiting as have I for that call to come for another surgery date. I pray it is soon.

These are my prayers of hope and gratitude for the whole of us,
Mark56 :)

Oh my
 

I can't explain how bad the pain is today. I have done nothing different to make it worse (at least I don't think I have).
All I can say is that I was counting the days to the final implant and now I am counting minutes. Not good. I am sure we are looking at another 3 weeks or more. Each time the phone rings I say " oh Jesus, make it be them"

Then the caller hears disappointment in my voice.
I had my MRI on Tuesday . We did it as I can't have another one with leads in my face. With the help of a lot of Xanax, I slept thru it.

Tomorrow is my teeth cleaning day. Oh the fear of cleaning the teeth on the right side about sends me into total despair. But I will get through this too.

As you can tell, today is a bad day. Time to get off of this couch and do something to get my mind off the pain. Usually works pretty well.
How about writing a poem:

Oh stimulator,oh stimulator
Where are you today?
Are you in the warehouse?
Is my name on it for now?
Maybe you are in the lab
Glad to be charged up
Are you dreaming of the day
That you will have your new home?
My body is warmer
Than that cold shelf you sit on now
So do what you can do
To get the show on the road.
I am waiting anxiously to meet you soon
Until then, we have to communicate by email.
Oh stimulator, goodbye for now.


That was really goofy. Oh well, was entertaining. Talk to all of you soon

Love
ASAP,
Cheryl


.

how to find a Doctor info
 

We wanted to add some links in hopes this may help others find a Doctor in this area of surgery . Not sure if there is any top doctor that deals with just PNS OR Face Pain Stimulation only. I think most also do SCS and Neuro Stims for backs neck and other areas. It would be wise to ask this when contacting your pain management specialist , or Doctor. At least if they have knowledge of T.N , Neuro Stim for face pain etc....

http://www.poweroveryourpain.com/sb/pain_specialist

http://www.mymedpages.com/pf/search.do

Peace
BMW

Name your stimulator
 

My vote for Mark's stimulator is "sitting bull".
Mark sits on him
The bull is strong
The bull is aggressive
The bull does not sit around

Do you have ideas to give Mark's stimulator a name?

I need a name too!!!

Asap
Cheryl

Cheryl... I made a thread down below (not up top in the stickies info ) for side chat as we wait ..go check it out it has your name in the title....
:hug:
I just sent you link to bring you to the T.N. forum in case you are using a link that bring you direct to this thread okay... check you email or just scroll to very top of this page and click on where it says.
Trigeminal Neuralgia
PEACE
BMW

Cheryl..... :)
 

http://dl10.glitter-graphics.net/pub...o57ba3o735.gif

Sending you big ((((HUGS)))), prayers, and anything else I can dig out of the bottom of my soul !!!

BTW, your poem is NOT 'goofy'!! it brougt a tear to my eye!!


We're all here with/for you girl!! :grouphug::grouphug::grouphug::grouphug:
Rae

Thank you
 

You are so sweet. Thank you for liking it. I have never,ever tried to write a poem or anything like it. I thought everything had to rhyme. I could not find the right words...so just wrote it thru all the pain. I am going to try another one tomorrow. Have to do something while I wait. Take care of yourself:winky:

Cheryl and ( stimulator.. Name to be announced soon)

Mother hen of ad
 

Thanks Mother Hen for setting me straight. I guess I was going through the back door.maybe we should call your stimulator Mother Hen of all AD'ers. But group leader sounds a lot better. Hope you have a cooler day tomorrow. I am going to dentist. I would rather put a sharp stick in my good eye then go to dentist. Watch for my daily poem.

Cheryl and (stimulator , to be announced soon)

GEE I am not a mother hen or a group leader I am just helping ...we are all in this together !!
:grouphug:
T-REX it is.
WE hope you get your date next week !!!!!!!!!!!!
:grouphug:

But, you have so much more information and knowledge since you birthed the very first stimulator for facial pain. That gives you the Mother role of all times. There are so many people just plain lost when all this stuff is thrown at us. We need a leader to help us. Thus, you are the leader of the pack. Just not too sure about the T-Rex pack!! Just a little scarey!! That is what I meant dear Tina. Hope you did not take that wrong????
There have been so many times that I did not know where to turn and you continually get me back on track. Got to run to dentist....actually would rather walk.

:grouphug:
without all the yous there would not be a need for someone to organize info and have it in a place easy to find.
(Thank You NeuroTalk :D !! )
There would be no contacts and info to share if it were not for all the yous. its a team effort. when other share like you have ... we help each other. That how it is , But I wish there were no yous in this situation and in such pain

I dont like the I :p
I like the we of things :p .
PEACE
BMW

now take me to your leader :BeamUp:
:D

Moved by a Poem
 

Dear Calewark-
Your poem was truly moving. Your new friend stim unit, as yet unnamed, IS there and awaiting permission and timing to shake your hand and touch your tender face. When you look in a mirror, you ultimately know your new found friend is helping to relieve your pain in a new way. Time will bond your friendship into a lasting walk managed better than ever before.

Being moved to poetry, you may want to have a name for your new friend which reflects the friendship bond you will form. In the Greek, you may know of the word Fileo, meaning love as between deeply bonded friends or family members. Maybe your new friend would be well to be named Fileo. Not as stylin as T-Rex nor as evocative of Jurassic impressions, BUT everybit as strong, since it will be born out of friendship. Your reference to your friend on the shelf awaiting that first meeting with you brought this to mind.

ASAP,
Mark56

Fileo
 

Mark
I love it as it stands for what the relationship will be
Between (it ) and I..
Thnak you so very much for your time and prayers

ASAP
CHERYL

Peppermint
 

Good Morning to all. Monday mornings are always special to me. Wondering what the week will bring me. Of course, I am waiting for the phone to ring to get my stimulator final date.
I came across something really interesting. Yesterday I was reading my magazine " Real Simple " Some of you may get it each month. It is my favorite magazine.

Anyway, there is an article that gives 25 ways to boost your energy.

# 8 reads this way: Smelling peppermint " stimulates the trigeminal nerve, which stimulates the area of the brain responsible for arousal and can make you more alert.

so......do not know if that would make my nerve act up more or what?? Interesting to find out.

I am going to think about my second poem for my stimulator search soon. Other than that.....just a usual day, dealing with all the burning pain and working on things to do to take mind off of pain.

ASAP
Cheryl

How Long ???
 

Hello Everyone,
I am usually the one reading all the posts of others and sending my good will wishes to them that their pain lessens and letting them know that I continue to pray for them. Today, I feel that I am on the other side right now. The pain is just about the worst it has been. Why? Don't know. The weather if fine so it can't be that. All I know is maybe as each day goes by, as I wait for the permanent surgery date for my stimulator ,is getting to me.
I find myself remembering the days that I had the stimulator. For those of you that are reading this because you are interested in learning more about the stimulator....read on. Yes, I complained on and on about the inconvenience of all the cable phone cords hanging my neck, the tiny wires pulling on my face, the generator was heavy.....on and on. I regret those days of complaining. They were 10 days of very little pain. How many times did I say " I have to wash my hair" " If I drop this generator one more time, all the wires will be on the floor" " If If If". The minor, and I mean minor inconveniences of the trail is nothing. It was actually very easy to deal with as my pain level went down at least 60%. I learned a lot about the AD pain. One day v1 would be having a hay day. Then another day V3 would act up more than one of the others. What is very interesting is we take being pain free kind of for granted. We are given an inch and we want more. I so remember ( and believe me, will never ever forget ) when my Doc took the wires out I was so happy to be rid of all the cords. 1/2 of a minute I was crying asking for the stimulator back.
I am crying today for the stimulator. So, that brings me to my poem for the week.

Oh Stimulator, Oh Stimulator
Where are you today?
I cry for you and look for you
Do you hear me, Can you see me
Every day and every night
Do you know my name?
Are you as excited as I am?
I was born in Denver, Colorado
Where were you born?
Maybe China?
Maybe USA?
Maybe you will find me if I give you a name
What would you like to be called?
Think about it and I will write to you soon.

Love
Cheryl