Welcome to the "Bionic Butt-Club"

What is your original pain condition if I may ask?
Insurance companies can play some tricky games. Even if you do wait till the next year and change insurance, you could possibly get denied as "pre-existing condition".
The most important part of the 'Red Tape' is getting the doctor to send your insurance a letter of 'medical necessity'.... and then once approved, get it in writing. I'm not sure regarding the Medicare "DME" issue.....Medicare has made so many changes lately that I would talk directly to a Medicare Rep (and get THAT in writing )

And yes, you made a good judgement call regarding the cost in the longrun....(Even if you DO have to make pymts up to $5K, assuming your SCS proves successful) My pain meds were running me almost $1k a MONTH.

Like you, i spent 100's of hours online reading up on this procedure and even at that, when it came down to the nitty gritty, a few 'surprises' were pulled on me (such as battery placement....and in another's case they completely changed the manufacturer without his knowledge/consent......you know who you are M56PJ ) Nothing to fret about, just saying, be open to variables.

All your Q's are good ones, these things are important for us to have 'peace' with......somehow it all ends up working out. Sponge baths, plenty of powder......you'll get thru it. Just read thru alot of the threads and posts here and it'll paint a pretty clear picture. Listen to your body.

It's good to have you on board!
Stick around so we can learn from YOU as well!
It's a TEAM effort, no doubt about that!

Rae

When I had my trial i really did not have an incision the lead was inserted through and epidural needle thingy. So all I had was a small like hole that the things came out of and then a stitch to hold it in place. While the trial was in I would sponge bath and we bought some of the waterless shampoo so my husband could wash it using that and use a washcloth to get it out. It did not get it as clean as washing but made it bearable and not so oily. When I went in for the permanent I had to stay one night at the hospital. I had two incisions one about 4-5 inches long where the battery was and one straight up my spine about 8inches long. When looking at an xray of my back you can see the lead and two rectangle things near the top. I have never asked what them are. When they first put the battery in they put it near my bra line on the right side and it was awful. Every time I would try and sit back it would hurt so we moved it right above the pant line. That was a great place until I fell and ripped it loose. I dont think that happens to many people but of course I would be the one in a million. They went in an repaired it but later that month I had to have it removed so the side could heal up better and not be inflammed. I will get my battery back later this year. After the surgery you need at least two good weeks of total rest no work or house work. After the first couple weeks I was able to start moving around alitte but had to be careful and no heavy lifting or bending. After the 6-8 weeks if your feeling up to it they will start letting you go back to being more of your normal life but just be careful. If you have any more questions please feel free to ask. We will be glad to answer.
Angela

I just want to thank everyone for taking the time to respond. This seems to be the most helpful site out of all the ones I have found. It's rare to hear any good stories about the outcome of the scs. All it seems one can find is the negative (which I realize happen). I am very realistic and know that it can go either way.

Here is my story:

Five years ago, I was playing in a softball tournament one weekend. It rained almost the whole time. I ended up with walking pneumonia a few days later. I literally coughed so hard one night that when I went to get up the next morning, I hit the floor in the most excrutiating pain I had ever felt. They thought I had just pulled a muscle but it turned out I had two ruptured discs. They did a discetomy that didn't work and caused the discs to completely blow out. I did physical therapy and injections trying not to have another surgery because I was terrified of back surgery and the horror stories. This went on for several months until my foot and leg went numb. My neurologist said you can do two things, lose the use of your leg or have surgery to repair the discs because you are risking permanent nerve damage. I did the surgery in Feb. 2006 but ended up with nerve damage anyway. I felt GREAT at first but it wasn't long that it made a turn for the worse again. Scar tissue built up quickly and embedded the nerves at the L4/L5 and L5/S1 levels. Lucky me that I am one who's body produces scar tissue. THEN.....

I had mentioned to my doc about having constant burning pain in my shoulder and my fingers going on for a very long time. I said was that just the stress from my job? He said lets do an MRI just to see. Welllll he got the results and said oh my, your neck is worse than your back ever thought about being. I had 3 ruptured discs that had to be repaired quick. I had a 3 level fusion on my neck a week later.

Fast forward 4 years, NOTHING has helped the pain. I have failed back/neck syndrome, and DDD. I have been through multiple shots, physical therapy, MRI's etc and there isn't much that can be done. They finally told me this is what I am going to deal with the rest of my life. Two years ago, my pain doc wanted me to have the SCS done, I went through the evaluation and was trying to get set up but it took too long. My LTD and company insurance ran out. I was approved for SS disability a few months later but in between that time, my daughter had a baby girl who was born with down syndrome and heart defects. I had to help with her and go through her surgery so my procedure was put on hold. She is now two years old and just a big ray of sunshine in our lives!

The pain is so bad now that I have no life. I can't even walk around the store without barely making it to my car and being down for two days under the influence of pain meds. I have two grandchildren that I can't play with and do things like I want. I told my doc enough if enough, I am READY. If I can get off some of these meds and reduce the pain even 25%, I will take it.

So here I am, scheduled for the evaluation, trying to get the trial done with big hopes that it will hep me regain some of my life to do the permanent implant. I hope you guys don't mind if I bug you to death with questions as I think of them lol

You could never 'bug' us enough no matter HOW hard you try!!
We are just one big happy family here in our own li'l world
And YES, like you, I had searched the cyber world endlessly... It was easy to find web sites with info on the SCS but i could NOT find any legitimate ones with discussion from the patient's point of view!! The few I did find had a lot of negativity and/or the members seemed to 'bicker' amongst themselves....but then when I happened upon NT here, I was instantly drawn in. At that time, this SCS/Pain Pump forum had not been created yet, so i frequented the "Chronic Pain", Peripheral Neuropathy, and RSD sections. (by the way, if you still have that 'burning' neuropathy pain, I would highly recommend hopping over there to the PN forum. It is very active and FULL of endless knowledge. I jump back and forth between this forum and PN, and RSD) Anyway, I soon realized that people were coming to this forum by the bucketloads asking about the SCS. It became evident that having a seperate forum specific to this discussion would be very beneficial.

We're glad you've happened upon us and hope you stick around to share your experience. We continue to learn and grow on a daily basis and the neatest thing about this is that it's 'real people' talk. Not business propaganda, no sales pitches.....just real people who are fighting to get their lives back, just like you....and from what you've shared, you've got aLOT to fight for! So, thank you for sharing, and you'll be amazed at the comradere and true loving support you'll get here.
We help each other as we go thru the gammet of emotions that chronic pain conditions bring.

Isn't it 'amazing' some of the things we are told when we reach out for medical help with a pain condition ? 'stress'......'menopause'.....'it's all in your head'....... THEN, once it does become clear that there is a 'real' situation going on, it can be difficult to find a Dr willing to make the commitment for the long-haul, without being 'passed off' to the 'next' guy.
Honestly, (and with all due respect to the medical personnel) I've learned MORE from this forum than I did from ALL the Dr's involved in my 5yr battle.

You certainly have seen your share of struggles, but I can sense you are determined and ready to get your life back! Chronic pain is such a rip-off.

I'm sure you've probably read thru the threads and topics involved in the course of getting this procedure. There's a good thread somewhere down the list here regarding the pyche eval. It's all standard procedure and it appears you've got a good grasp on what's ahead.
And yes, there ARE stories here of struggles and failed attempts, but there is a wide range of folks here testifying that the SCS or Pain Pump has helped tremendously. There are no two stories alike.

From what I've seen, especially here lately, is that the hardest part of the process is the WAITING. Once the trial procedure proved successful, it is VERY hard to have to wait for the permanent, especially after having had a taste of what a painfree life is like!

Welcome aboard, my friend
Rae

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

Angela, where did you get the waterless shampoo? I didn't know there was such a thing. That will definitely be put on my "purchase list". How in the WORLD did you tear the implant loose just from falling???? I am just cringing at the thoughts of that! Bless your heart! Just the fact that you are letting them go in a 3rd time for the battery must mean you have had SOME kind of success with it, right? How much relief would you say you have gotten?

Rae, You nailed it on the head when you said its passed on as its all in our HEAD!!! I was in a relationship for 13 years. He finally couldn't take my pain issues and mood swings nor could he understand them. I heard a few times towards the end that it was all in my head! I can't say I blame him in a way because if someone has never been through it, they truly don't understand. But in another way, I know I would have stuck by him if it were reversed. If this works, I will really kick myself for not doing it 2 years ago because things wouldn't be the way they have turned out. Thanks for the suggestions of the other forums. It took my brain almost an hour to realize if I went to the main board, I would find those topics lol I will definitely stick around to chronicle my progress. I don't have a way with words like you and Mark do but if one person can take something away from what I go through, it will be worth it to try and help.

Mark, I have read your posts and you are definitely the poster child for SCS!! Yes, that is a compliment too lol I have been talking with a rep from Boston Scientific for a while now. She has yet to sell me on it. She told me that isn't her job. Her job is to answer any questions and let ME make the decision on what is best for me. She is an RN. I think that is why I like her so much. Now I am going to have to threaten her with 100 lashes of a wet noodle if she lets them put any other SCS in me but hers lol Seriously, she has been VERY patient and answered numerous questions for me. She calls me twice a week to see how I am doing. How do you like the BS unit? Is it easy to use??

My pain doc has given me the Medtronics package several times. I was finally honest with him in May and told him I do NOT want the Medtronics after all my research. Yes, I know there are success stories with Medtronics. I said I am interested in the BS implant, does he do those? He asked me why and I was very honest. I said bottom line, I want the wireless remote. I said if I am going to lead an active life again, I don't want to be tied down to a bunch of equipment. I told him my other reasons but that was THE main reason. He grinned and said, as usual, I can count on you to do your research. He then admitted his favorite rep to work with was the BS rep but just passes out the first package he grabs when discussing the SCS with patients. It just so happens with me, its been the Medtronics package. I was also given a list of patient advocates for the SCS. Naturally, they give the positive patients to make one feel better but I already knew there were the negative patients. We have all read those stories online. Are we allowed to post links to blogs? There was a blog I came across a few months ago where a gal chronicled her prodecures and she has the Medtronics SCS. Like Mark, she is an attorney and her posts are very fun to read.

Mark, thinking about the permanent implant and those incisions does turn my stomach in knots. You have given me a little comfort. I thought my laminectomy/fusion recovery was a breeze. I had been in so much pain prior to that surgery that to wake up and realize that pain was gone had me ready to dance a jig. I ended up in the hospital for 5 days (not allowed to get up for 3 days because of complications) but even through that, it was a breeze recovery. Just a slow recovery.

So here is my warped humor regarding this SCS.......I joke with my friends and tell them I am going to have an alien baby (the implant). I said it is going to go in my butt so when I meet a good looking guy, I can ask him if he wants to burp the baby. I tell my kids that I am going to go on the Maury Show. ET..........you ARE the baby daddy!!! We will have to name this alien baby soon

Good Morning Jami-

Recovery with this new Boston Sci side kick of mine has gone very well. No, not anywhere as severe as the recovery from the laminectomy/discectomy/fusion. There is no back brace. I was sent home with ample bandaging of the incision sites and four med prescriptions to add on top of my pain management meds. I was sure to take them all. Keflex as an antibiotic to avoid infection, Decadron as a steroid to help through the first few days of potential inflammation, Flexeril for potential spasm control, and Percocet as a pain med were my arsenal of post-surgery weapons. I was sure to use the Keflex and Decadron in full, and those scrips lasted only up to a week at most. The Flexeril and Percocet I weaned away through the second week to discontinuance. There is still some soreness from surgery.... gosh, they did remove a bit of bone, pull back on some muscle, a bit of cutting, some push through of wires between the paddles and generator, so it seems a reasonable pain profile which is waning.

I am thrilled with the Boston Scientific unit! Would I be their poster boy.... in a heartbeat! The unit works so well, the controls so easy. I refer to my remote as a garage door opener; although, I was not given a program to actually open the door. It was installed with only a partial charge, so when I got home, the base unit was plugged into the wall for its charge, then I took a glue patch and put it to the test about a week after surgery. Interesting how the unit emits a beep while zeroing in on the generator, in my case in the right hip, then when it is directly over the generator, the beep stops and SMACK, it stuck it to me..... Well, OK, not necessarily SMACK because only the week before they had cut my open and stuck a foreign object in there, but you get the idea. I was a little more ginger with the removal of the adhesive.

Charging really only took about 45 minutes. My remote indicated full charge, and after five days of continuous use, still indicates full charge. This puppy is my new friend as it has brought me freedom from the "drive me to the brink of death" nerve pain, and I have been free from that pain since last Friday at mid-day when we calibrated/programmed the generator. I am HAPPY with this. Friends say they hear it in my voice and see it in my eyes. I feel as though God blessed me in a great way, and I am grateful.

Now to the beginning of withdrawal from the pain management meds. This will be a good thing, I can feel it.... I hope and pray yours goes as well. Yes I do!

Glad to have Boston Sci,
Mark56 PJ

Mark: thanks for all your input and knowledge, I have learned so much in such a short time from all of you here on the scs forum. Just a suggestion, I have had gi trouble several times from fentanyl patch and have used suboxone so that I could comfortably get off patch. Have you considered this? I am so sensitive when coming off these meds, this is the best medication to prevent withdrawel symptoms. Just thought I'd throw this out. Pam

Hello Pam!
you bring up a great suggestion.....and i actually asked my Dr about this med (suboxone) and if i recall correctly he said that it takes a specially licensed physician to prescribe it.
I was surprised how easy it was for me to taper off the Fent patch. I was at the highest dose of the 100mcg (every 48 hrs!)....they are supposed to last for 3 days, but not for me..... I had a very high tolerance to opioids and was really nervous about weaning down......but I'll honestly say, that once I had the SCS implanted and my pain went down so much, my body just needed less and less of the meds.....we did it safely a month at a time going from the 100's, 75's, 50's 25's 12's .....
I won't fib by saying there weren't any 'bad' days, even to this day I can get a pain flare from hell and not knowing what on earth i did to bring it on..!?

But, I didn't experience ANY of the horror stories I've heard of people trying to get off these meds. Actually i recall seeing a documentary or something that indicated that those of us who truly suffer chronic, longlasting severe pain and have legitimate reason to be on high strength opioids,, our pain receptors soak them up and control the pain as it is intended. It's usually the folks who are taking strong pain meds without really needing them, or abusing them in some way....they are the ones who have the struggles of getting 'hooked' and having to withdrawal.....because their pain receptors didn't need them the way a 'real' pain sufferer does......and that's why they were being used to 'get high'......no pain receptors 'received' them, so their brain signals directed the effects to attain a euphoric feeling.
Does this make sense? i know what i'm trying to say, but i'm afraid it isn't coming out right....

Everybody is different and the important thing is to have a physician in a good trusting relationship and the tapering is the KEY. Taper.

Anyway, thanks for bringing this up. Good discussion!
I hope more will chime in on their feelings on this.

As always,
Rae

i have read a lot about SCS I am in trial now I am so unsure the trail is very postive, but I am concern about permement installation because of all the negative coments, have not seen a lot of postive comnent about SCS thanks for the leap of faith still wondering if I am gonna do it