Originally Posted by Rrae

Wow,
That's a good question. ! The very first thing that came to mind is make SURE you get an up to date MRI of your spine B4 getting the implant....in case they need to refer to that regarding your issues with upper cervical.
We can't get MRI's after getting the implant.

Someone here (can't remember who) was implying that they were gonna get a dual lead implant, one lead up higher than the other to cover cervical and the other lead for the lumbar.
Others have successfully had 2 implants.....
I'd make sure you have good communication with your medical team and have the plan all layed out on the table (and in writing!!) ...i'm a biggie on that, because I've seen too many times when a patient was told ONE thing, yet in reality their chart was different.

The medication question is a good one as well. I remember having a fit over how i was going to manage during the trial and trying to determine if it was working.....but honestly.....it all just 'works out'......you know your body and you'll somehow 'know'.....even if you have to try and cut your meds way back for a short time to determine if pain is decreased in your lower body.
Hopefully your Dr will coach you thru this.

I'm sorry you are having such a bad pain day.
Flares still come.....and to this day i do not comprehend what i do or don't do that triggers a 'bad' day.
They suck.

Hang in there
Rae

Originally Posted by Mark56

Hi Jami! I am thrilled you chanced to come here and post such worthwhile questions regarding one of the more radical surgeries offered for treatment of chronic pain available in medicine. This thing called SCS for those of us whose issues are spinal.... spinal cord stimulation.

Being a veterean of the operating table so much so that it is almost nauseating to contemplate, I was brought into awareness of SCS a couple years ago. I looked briefly at it, read the risks of surgery, KNEW I did not want another surgery, and went UH UH, this is NOT for Mark. No way, no how, no no no no NO!! Sure, friends had told me of the surgery and its effect on family members or other friends they knew. I was closed. NOPE, not gonna listen. I was afraid to have another in my list of spinal adventures. My fear..... it was a heightened fear of the possibility of something going wrong, you know the fine print part, no not the death part, the Oops, you are now paraplegic part. I felt at risk. I felt harmed sort of by the system that was supposed to have helped alleviate the issues with which I struggled. I was frightened.

Fast forward to January of this year. Finally, having suffered chronic nerve pain for over half a decade and frankly being sick and tired of the life of side effects with morphine and such, I actually listened with favor when my wife, Cleo, said "Here, read this about spinal cord stimulation. It might help." The article was about the ANS EON Mini unit. I read the article. Became enthralled. Read more, researched ALL I could possibly find. We had an appointment scheduled with my physiatrist anyway, so we went in article in hand, and asked what he thought. He said something to the effect "You are the perfect patient among all of my patients for whom this is meant." I was hooked. We watched the video. I spoke with and emailed with patient amabassadors who had the unit. We prayed about it. The answer was clear..... live with pain as I had or proceed. We said yes! [Reminds me, I still have to learn the Salsa for Cleo]

The Trial came 13 May. Two very tiny POKES if you will, by about the largest gauge needle known, to insert the leads, no incisions really, the leads were sutured to better assure they stay put, and I was sent home with wires taped securely to my back and a generator strapped to my waist with a velcro enclosure. I was IN HEAVEN. I sobbed, not because I hurt, rather, because I felt no pain, NO PAIN. My wife asked how I felt and I cried due to the joy. The picture the fumpy Ken doll with grey hair and tears running down its cheeks. JOY AT FEELING NO PAIN! It seemed a miracle.

Sure, I could not shower for the week of Trial. The hair got rank. Sponge bathing was OK for the other necessaries. Lifiting my hands above the head, a no no. You see, the wires were just kind of laying there in the dural space next to the spinal cord and the only thing holding them in place were the sutures at the exit through my skin. So I behaved. Wanted that benefit as best I could get it, and it was soothing, glorious, wonderful, a Gift from GOD as though He had placed those wires in place. That week charted out at 70% to 100% pain relief for me in my situation; not necessarily what everyone gets, but for me, a keeper. I wanted the real McCoy. Oh, how I hated it on 20 May at the end of trial when they removed the wires, the unit, that lifeline which had been thrown to me. But gone it was, pending insurance approval of the permanent implant.

So, here I was, a patient fully read up on the ANS, who had actually recieved a Boston Scientific Trial [you can read about that in my thread on ANS EON MINI], you know when you are there in the prep area waiting for the Trial surgery and the rep comes in and says, "Hi, I am So A. So from Boston Scientific!" I did a double take! I told him he must be in the wrong room, wrong patient, I was supposed to see the ANS guy. NOPE. Some flub up... in the military they refer to it as a SNAFU. Oh well, after answering 30 minutes of questions, we proceeded with the Boston Scientific unit. Best decision we were led to make in our lives. Wondrous.

I HATED THE WAIT FOR THE PERMANENT. OK, that is out. Now you know. Hardest wait you will make if the Trial goes very well. It passes. We ALL help you through that part. Really! So many here sent messages of encouragement during that time, a blessing that humbles.

29 June, implant of the permanent. A four and a half to five inch incision at about T8 for me to allow for the laminectomy to enable insertion of the paddles. A smaller incision at the right hip on me to make for the pocket to receive the generator. The most painful part is that channel they make through the tissue to bring the wires connecting all of the works. But, you know what? I know, I KNOW it was well worth the pain, not nearly as painful as my discectomy/laminectomy/fusion, and more rapidly recovered. Here we are two weeks post op, and I have withdrawn from the post op pain meds prescribed IN ADDITION TO MY CHRONIC PAIN MEDS. There is some discomfort yet at the incision sites, but it is passing and not requiring the percocet chaser to my morphine chronic pain med. Showering was allowed two days post op.

Last Friday, we calibrated my generator to me and from that moment it has run 24 hours a day. Via the remote, I set the little guy at different levels or programs depending on how I feel, or when I go to bed, just turn it down low. It works!!!!!!!!!!!!!!!!

Five days without ANY NERVE PAIN. NONE! Went out into the middle of our street last evening and shouted at the top of my voice Praise GOD, I FEEL GREAT! I feel I owe it all to Him. The very develpment of this wondrous technology. I am humbled.

Today, we went to my physiatrist for a follow up post op. Told him the above. He was thrilled beyond measure!! Now we are working to wean me off of the pain management meds. I have a schedule. With God's strength, I am committed. My wife and I have so much hope for a life restored in large measure due to this miracle invention.

I understand everyone is different. Results will vary. But, for me this brings promise of a miracle worked in a life that was whiling away from one med dose to the next, much sleeping in between. That is not life, it is subsistence. As for me, I want life.

Now that I have probably exceeded the limit of anyone's tolerance or the posting size on NT, please let me assure you that you cannot ask too many questions. Any of us is willing to chime in to the best of our ability.

Time for me to take a nap,
Doctor's orders you know,
Don't overdo post op,
Praying for you in your approach to Trial!!
Mark56 PJ