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