My pain doc (who is also an anesthesiologist) has tried to talk me into giving the SCS a try for 2 years. I can't stand the pain in my back and left leg any more so I am going for it.

I am in the process of getting my SCS trial. I have my psych evaluation next week, meeting with my doc the following week to schedule the trial, then we were aiming for the permanent to be done in Sept if all goes well.

I have read forums for hours, more hours and then even more hours to make sure I know what to expect. Just when I thought I had my brain wrapped around it, something dawned on me this morning that I had read.

Because I am disabled, I have Medicare with Humana as my supplement. Somewhere, I saw it mentioned that the SCS is considered durable medical equipment. I also saw that it costs a pretty penny.

Is it actually considered DME when the ins. co. pays? If so, I think I would be required to pay 20% and my max oop is $5,000. I can't afford that. Anyone out there have this done through Medicare and can give me a ball park range of what you had to pay out of pocket?

I fear that after I finally got myself psyched up and looking forward to having this done that I have to put the brakes on until after the first of the year -when I can change plans to cover more

I have other questions but those won't matter based on if the above is the case. Any help/info would be greatly appreciated!!

Jami

Hi I do not have medicare but I do have regular insurance. Mine is 90/10. My out of pocket was 2,000 for the year. My doc did my trial and it was a copayment of 30 dollars cause it was done in office. My permanent was done in the hospital and the bill was 130,000 dollars. My insurance would only allow them to charge me 80,000. They did mine without payment upfront and I was able to make payments to the doc, the ansesia, and the hospital. No one made me pay of front so that was good. I make them like 20 dollars amonth if I can. Maybe they will let you make payments. Hope this helped some even though I dont have medicare maybe you can wrap your head around some numbers. Good Luck!!

Thanks so much for your response! It does help me get my head around it numbers wise. How long were you in the hospital? I did know that the trial would be covered under my dr. copay since he is doing it in his office. That helps some. The big difference in my plan is I have a $100 per day hospital copay and everything is at 100% after the copay BUT DME is only paid at 80%. In the long run, I think the cost would even out because I will be able to cut down on meds and dr. visits (I HOPE!!! lol)

Here are a few questions:

My first question is an off the wall one. I understand a shower can't be taken while the trial is in place and I understand that. BUT........how will I be able to wash my hair? Am I right in understanding there is no bending while its in place? I guess I can stand outside in a rain coat and let my kids spray my head down with a water hose LOL When the permanent implant is done, am I allowed to lift my arms over my head to wash my hair? If not, how long before I can do that? I live in TN where the temps are MISERABLE through September so I am a little concerned about grossing myself and everyone else out with a smelly body and nasty hair lol

Outside of the normal no BLT after the surgery, are there any other limitations/restrictions?

There is a very strong possibility that I will have the paddle leads done due to scar tissue. How long is the incision for that procedure and approximately where will the incision be? How small of an incision is done for the trial? My doc told me that he prefers putting the implant just above the waist but I am probably more of a candidate for the bionic butt club since I have PLENTY of padding there lol Do jeans or pants rub on the implant? I have heard that it can be pretty sensitive/painful where the implant is. If this is the case, I need to get some different pants or jogging suits to wear for a while.

Ok this is enough to get the questions rolling. I am sure I will have PLENTY more. I appreciate any input that can be offered!

Hi ~ I had the implant for 6 months (it had to be removed) so maybe I can answer some questions.

I can't for the life of me remember how I washed my hair during the trial period. I know I must have because it was a week long trial. But that was 12 years ago, and I just can't remember. After the permanent implant, yes I could put my arms over my head to wash my hair but I had to be careful for the first few weeks. I couldn't really scrub my head hard or leave my arms up for too long. Also, there is NO vacuuming. Besides, a spinal patient is not supposed to vacuum anyway according to my neurosurgeon. but you are not to vacuum during your scs healing period. actually you never should. you never should rake either according to my neuro. gets you out of some nasty jobs, huh? lol

my doc put my 'generator' right above the waist on the side. that way my pants didn't rub on it and nothing pushed/pulled when i sat down. if it's on your butt, your pants are always going to be pushing on it. that would be quite uncomfortable. it turned out for me that i didn't have enough fat content, so mine tried to work itself out of me, and i ended up having to have it taken out after 6 months. ick. besides, during the trial, they gave me so many limitations that i didn't get a good assessment of pain relief. i thought it was covering the pain great, but of course i would cause they wouldn't let me do anything. after i got the permanent one, i went on about my normal routine, and thought i was gonna die! i had it reprogrammed many times to no avail, so make sure you give it a good going during your trial. go about your normal routine to make sure it covers your pain.

the incision for the leads is very small. i can't even see it now. but the incision for the 'generator' is about 4-5 inches long on my side and is still very apparent. as i said, that was about 12 years ago. the implant site wasn't really what i would call painful, but it was just weird feeling. now that they've taken it out i have scar tissue there and where the leads were, and it IS painful now. having it taken out is much worse than having it put in. the surgery to have it put in is a cinch. no problem at all. also, when you have the unit on, you will feel it 'zapping' you much more when you lean back against something. for instance, if you lean back against the leads, you'll feel alot of stimulation and you may have to turn the unit down. you'll learn how to work it as you go. that's one thing that surprised me, and they didn't tell me about it. lol

if i can answer any other questions, let me know, i'll try to check in again. hugs, lee

I had two trials. When on the lumbar trial, I was able to bend over the kitchen sink and wash my hair and then sponge bath. For the cervical trial, I had to bite the bullet and not was my hair for the whole week. I washed my hair the morning before the procedure and then when hair got looking not so good, started wearing a ballcap when going outside. The let up in the pain felt so good that I really didn't care how my hair looked, I was just so thankful to get the pain relief.

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