Tina,

Please do not hesitate to ask any questions. I wish I could have found some of these answers before my procedures. Most of my research was based on those who had back, leg and arm issues.

I did not have any surgeries prior to my stim implant. Since I have atypical face pain, surgery is not usually successful. They do not believe there is any physical reason for the pain. There is something in the brain that is miscommunicating and that is why anti-convulsant medications were helpful in reducing the pain -- but increasing the FOG!! I had several blocks to some nerves in my face and they did not help at all. I also had a radio frequency ablation (RF) to two nerves. The abalation to my mental nerve (near my lower lip) caused damage and much more pain.

My leads were placed at C6-C7, however the Boston Scientific rep thinks that the doctor may have put them even higher up in my spine than the entry point. He says it is rare to get coverage in the face from the spine, but I am thankful to be getting it.

My worst pain came from the incision where my battery was placed - just below my waistline. It took about two weeks for that pain to go away. I had to wear a cervical collar so that I would restrict my neck movements and help prevent the leads from movining. I still have some restrictions such as no lifting, pulling or pushing anything over 10 lbs for three months. I am also not be bend, twist or reach my hands over my head.

I was able to use the stim immediately after my surgery, however I was told to concentrate on healing the first couple days and since I slept most of the time, I guess I was successful at that. The rep gave me one program in my remote at my surgery and just this past week during my follow up visit, I was given two additional programs and some more training how I can make my own adjustments. The program from the day of surgery seems to be the best.

I could not have asked for a better surgery, recovery and result from this experience. I find that the positives of this treatment posted on the web are few and far between the negative. I am so glad to see you are trying to change that.

Hi Terri.
I did notice you said you had radio frequency ablation that is like Gamma knife .
but it probably wasnt done on your Trig nerve ??????
and too the leads do not seem to be to any of the 3 branches trig nerves and more to the base of brain/ upper spine area.
It is great the doc got them up far enough.
If you go back a few pages on page 2 ?? here Kim also had SCS but later had a PNS implanted to the Trig nerve and the SCS removed. she also has 2 stims one for each side of face for BI-Lat.
I am enjoying the way everyone is sharing and giving such important info for others to find hope in... and power ..knowledge is power when researching the options one has available to them.
I would like ANYONE who has had stim for face pain to share ... The fact is there are times when this dose not work and the ending isnt happy . that is true in life and with this option. what works for one may not work for the next.
My friend Calewark is having hers done in Colorado too as did Mark. thats pretty awesome if ya ask me
make sure you follow doc instructions on lifting and bending !!1 dont over due it and know we have you in our positive thoughts and prayers for the stim to be ever lasting way to manage your pain.
Many many thanks for sharing and posting here. Terri you ROCK!!!!!
PEACE
Tina & T-Rex

p.s. I wonder.. ask if having a stim was a first option for you? I ask because for most others this is a last option . but for me since MVD,gamma were not an option my last resort was having the Stim. being the first to try PNS. in the USA . I do want to say again that SCS and PNS are the same thing the only difference is the placement of the leads It is referred to a PNS because the leads are placed in the facial area not to the spinal area. they are both simulators that mix the pain signal .

Tina,

My official diagnosis is atypical face pain. This is defined as pain that does not have a physical reason -- ie., trig nerve damage, but instead is a nerve to the brain miscommunication. The pain is in the same area as pain for the trig. nerve, but my MRI's do not show any damage, and I have constant pain, instead of pain that is common with TN or ATN. Most of my pain is in my lower face and so my doctor was very hopeful that we could get coverage from placing the leads in my spine. Surgery is not a recommended option for atypical face pain since there is not a physical reason for the pain. I was given various blocks and injections before the stim. was considered. I think this is the protocol that was required for us to get insurance approval.

I am thankful that I had a doctor that was willing to take a chance on this treatment. He appears to be in the minority!! An implant of a PNS is still a possibility if we find out that my pain relief is not enough when I try to reduce my medications. I am hopeful that the SCS will give adequate relief. Once my incision sights are healed, I doubt that I will even know that I have an implant except for the tingling in my face and the occasional need to charge the battery.

Take care and have a great day!!

Emelie

Hi friends,
I just wnat to let you know that my surgery date for the trial stimulator has been moved up to this Friday, July 16th! Short notice! My pre-surg is the day before, on the 15th.
I am excited and nervous about this, and I pray that it works! So please, as you go about your lives this Friday, could you think a good thought or say a little prayer, for me and my neurosurgeon, as we both go into unexplored territory (it's his first Trigeminal stimulator - he has done many others).
Thank you all for your kindness with me, a relatively new member. You have been great.
I will post as soon as I can, probably on Saturday or Sunday.
Mylastnerve / Lily

ha and there you were telling me I started the count down for the trial to soon
This is some awesome news Lastnerve !!!
Oh sister you can count on MANY prayers good thoughts and well wishes from now until well after the final implant is done !!
do not worry that it is the doc first stim for t.n. he has done many other stim implant to other areas of the body (back legs ..ect..) I think doing one for the back is much harder as they go to spine most times for the back. just let go and let God.
I have such over whelming positive thoughts this is going to help you soooo much for the pain. I am going to do a happy dance cus I just cant help it
T-Rex wants to happy dance too

I shall continue the count down..YES were are at .... 4
May God be with you providing comfort protection strength and make this trial surgery and the stim extremely successful at combating the pain you have been carrying and living with for so long.Thank You GOD.

PEACE
BMW...Tina
p.s. this is such awesomely cool news
remember email me with any worries questions or anything okay hugs sister!!!!

We are at 3.. 3 days till trial
Yes I enjoyed being able to chat on phone with you yesterday . we will do again very soon. keep taking care of you my dear friend . Your doc sound fantastic and I know your in great hands lily . really neat we are around same age .
Sending positive energy and good thoughts to you.
PEACE
BMW
3 and counting
names hummm I will think on that

I will say the same prayer for you that I prayed before I went into surgery. I will pray that the Lord will take the hands of the surgeon as he makes the first cut in your spine. I was so much more at ease after I thought of God being in control and be assured that God has been part of this surgery before!!

Oh Dear LastNerve- It is truly Wonderful to learn of your Trial on the 16th!! I am shouting for joy!! I admit going in for my Trial I felt no trepidation, just a bit of nervousness, this poking wire leads around in my spinal cord space,,, but it worked, and get this, IT WORKED FANTASTICALLY!!

The evening before the Permanent Implant, for some reason, I felt an overawing sense of "WHY AM I DOING THIS???? WHAT IF I CAN"T STAND HAVING THAT FOREIGN STUFF WITHIN ME????" And then I settled down to pray, knowing also that others were praying alongside my family and me. A calm that sets aside ALL fear came over me that evening. Every fear was dashed. All thoughts of poor judgment were cast away. I became centered, focused, ready for the implant, knowing we all as a team had worked hard to arrive at the moment when I might taste of freedom from pain, and that it would not just be a week trial this time, but it would basically be forever. God led me into a place of peace, peace that overcomes all fear.

The next morning, we gathered at the surgical center, and this CROWD of folks from our church came into my pre-op area and our pastor led us all in prayer. My surgeon was there. He was aware this was a procedure bathed in prayer. He was ready. And interestingly, by name, I recall the entire team of medical professionals who were there with us that morning. Spiritually, we were focused. Then, the capper came along, my anesthesiologist, came to brief Cleo and me, while the whole prayer crowd was still with us. It turned out our anesthesiologist's name was Hope. HOPE!! Do you get it? This is exactly what we have been feeling ever since the Trial, that there was HOPE for our lives now. Oh God, I had confessed many times the desire to end my life due to pain, and there He was again, holding out the hand of one who would have my life in her hands, and her name was Hope!!!

So, LastNerve, this is what I pray for you and will pray throughout your surgery, that all of you, inclusive of your medical team are bathed in God's presence and that through the procedure you will emerge filled with HOPE!!

Since my permanent implant, two weeks ago today, I have been ready for Hope to shine forth in my life. Last Friday we first calibrated my little implanted computer, the group here helped me select the name of PJ [meaning Praise Jesus] for the little guy. I MUST tell you and all since we first turned on the implant in my body I HAVE FELT NO NERVE PAIN AT ALL. None. Zero. Zip. Hope has been shining through my eyes ever since.

I meet people on an errand while I am out for a little bit [still recuperating you know] and they say "Mark!! You're back!! I can see it in your eyes that you are smiling from within." You see, those folks have been alongside during these years of relentless pain and suffered with me, seeing in my eyes despite my attempted smiles that I was crushed with pain inside. Now they see me FREE! I have gone outside and shouted "Thank GOD I am FREE!"

Sure, I am still on the pain meds which brought me to this point, and we have to strive to remove them from my life, but I have HOPE I can live free without them. You, too, LastNerve have the opportunity to feel and claim HOPE. I guess this is why I have gone a bit too long with this post. I just Hope and Pray for you this is your result as well.

Rest well my friend, HOPE is on the way,
Praying for you,
Mark56 PJ

Oh Mark, you'll have to to forgive me, I am feeling a bit unwell tonight, but I wanted to at least stop and say Thank You for your beautiful words. I can feel how strongly you are hoping for a good outcome for me, and I feel truly blessed to have the power of your prayer, and the strength of your words and support as I head in this new direction. I've learned to steel myself against hope, from 2 very scary brain surgeries that failed to help, and you can probably feel that I am guarded in my optimism. You really encourage me to put that aside and try to find the hope again. You and BMW both, as well as emsacco and Rrae - I feel that I have some very spirited and spiritual cheerleaders in my court! and it feels like this! Thank you so very much - I cannot begin to tell you how much it means to me!
I will also choose to enter the OR in a state of peace and acceptance, and let my masterful NS do his gifted work. He and I make a good team, and we get along very well. He is a great person, who, in the midst of fighting lymphoma, has used his experience as a patient to learn how to be a great doctor, and who uses his vacation time to fly halfway around the world to rural countries to teach his vocation to others. I'm a lucky patient. ( and he's a lucky doctor to have me as his guinea pig! )
Thank you again for all that you have said and inspired in me - you have a gift in helping others with your words, Mark, as do you, emsacco, and, of course, you, our beloved BMW.
Hugs to you all,
Mylastnerve / Lily

Hi Lily,
My name is Cheryl. If you would go to the top of this thread, you will read my story. Tina ( BMW) started the thread for me. It starts kind of backwards; but you will read what I went through since last year. Tomorrow morning I will write to you again; but would like you to read my story first so I do not have to bore you with the story too many times. I think you will find it very encouraging. The trail was so easy. In fact, 2 hours after the surgery, I went to the movies with my son and grandkids. Day surgery, non, invasive, etc. You will find it is very easy. But please read the journey and the journal from the beginning with me and then we can talk. I get my permanent implant on Aug 5th. So very happy. If you would like to send me an email please do. It is calewark@me.com. and my phone number is 303-722-1307. I would love to help in anyway I can.
Cheryl
ps. do not laugh at my terrible pictures!!!