My SCS implant was Dec 28, 2011 so I am 5 weeks post implant of a Boston Scientific Spinal Cord Stimulator. I didn't have a trial, as the arthritis in my spine was too severe to insert the leads. Next week it will be 15 years that I've been living in pain - the past 5 or so meds were not sufficient to make for a decent life. I have generalized neuropathy in my legs, and a great deal of arthritis everywhere, along with sciatica in both hips. My SCS is not helping much. The first 10 days the stimulation was extremely irritating. I've had programming twice since, but just don't experience much pain relief. I do if I turn the stimulation up really high, but I get some really bad aching in my thighs especially if I even have the stimulation set on very low.

I am trying hard not to get discouraged. Each day I try things differently, doing one program very low, turning the stim off for awhile, turning it on high for 20 minutes - you name it. I don't know - I just don't feel much different, and my thighs can really get hurting!

I emailed the rep - I just saw him a week ago for programming and he said from here on out, it would just be tweaking the existing programs. Am I missing something? I so want this to help! Is it possible my brain can be experiencing less pain - for example: will the SCS help me lower my pain meds even if I don't feel the pain relief? I emailed the rep today with all my concerns - we'll see what his response is. Was there anything in you all's trials that would help me? I've gotten programmed three times all told now (first time was in the recovery room) and I choose from 4 programs and can vary in intensity. Is there something that I am missing? I don't understand my thighs aching like this - my legs used to ache some, but not like this. I don't know - but I'm not giving up yet!

Another question: my paddle leads are sewn in place with anchors - a part of the pin lower than the lead itself is stitched in place. My surgeon lifts all BLAST restrictions at six weeks. Is this too soon? I doubt the leads can move up or down, but it seems they could move left or right. I don't want to risk any movement of the leads. Should I go back to normal life at six weeks?

Thank you for any and all guidance you are willing to give!

Wow, you don't just have one thing, you have it all.......

OK, so you could not try the stim in a Trial version due to your arthritis... but, it seems to me this should mean Boston Scientific and your doctor should be expending that much more care for you..... and WHY they may ask? Because you were not able to examine the procedure through Trial use... you went for the game, set, match in one serve. This is not tennis, it is your BODY, your LIFE!!! No Way a patient in your situation could truly make an informed consent decision whether this was a good thing to do without the Trial. So the question becomes whether you had to encounter any personal expense in this approach, such as a deductible and copays in a private insurance context. We are usually talking big bucks here.

The reason I ask about the expense above is beginning to develop an understanding of your situation. Without Trial, you are basically being thrust into a life of Trial, and it seems Trial by Fire. For this reason, I felt as though EVERYONE who bears risk regarding the outcome of your surgery should be active, involved, on top of this and not treating it as a "got cher new set of tires on that there car ma'am. have a good day." then pop you out the chute. THIS IS PRECISELY WHAT YOUR REP SEEMS TO BE DOING TO/FOR YOU. Your sitation Demands more. Frankly, you should have been allowed the "handle the wheel" approach to programming to see whether you as patient could come up with anything better than the rep has to date. This seems all wrong.

Here was my scenario. During Trial, I felt no pain, but then I was also still on pain meds and the stim was on top of that. Post permanent implant, I do experience pain, but manage it solely with the stim and have fully withdrawn from pain meds. I am back practicing in my profession. I am grateful for what the stim has produced in my life.

Your situation seems to be indicating exactly the opposite, as though if you had been in the Trial, you may have noticed the same result and then elected not to go through the permanent implant. A very serious discussion needs to occur between you, your spouse [or advocate], your doctor, and the rep. This result is not the kind of result which usually results in a permanent implant as I understand it.

Questions need to be asked whether better results are achievable. You are not a piece of waste paper to be thrown in recycle. You are a patient on whom a risky implant of a device was accomplished without Trial. Hard questions need to be asked such as long term prognosis, whether meds will have to be continued, is there a better result, such as allowing you to try programming the device.

I ache for you in this, as you had such high hope..... and that spine which is so damaged already. You are definitely in my prayers.

My paddles are secured on my spinal cord, and my surgeon prescribed physical therapy which took BLAST into consideration post surgery. I just still protect out of an abundance of caution and not wanting to see the inside of another OR for a Long Long time.

Dear Eliza, know I and others pray for you in this,
Mark56

So sorry to hear you're having so much pain and confusion. I agree with Mark it's hard to gauge if this is post-surgery pain and the tweaking that most of us had to go through for quite a while (only a few were fortunate enough to be able to self-tweak) as you do not have a trial to compare this to.

I know for me when I have it turned up too high it affects my leg muscles, esp.my upper leg muscles. And when I turn it down, or even off, it can take several days for those muscles to finally relax due to their being stimulated too much. I had to get tweaked many times and I remember the rep. telling me he didn't care if I "felt" the stimulation and not to focus on that aspect, but rather to focus on pain reduction. So maybe you need to turn it off for a while, let your muscles relax and then start at a lower setting and ramp it up slowly from there. Don't worry about feeling the stimulation. When that was what I focused on, I got my muscles overtaxed and it was difficult to figure out just where the pain was really coming from and what needed to be adjusted.

I sure hope and pray that you get the help and attention that you need to deal with this! You'll be in my prayers!!

This isnt good at all.

I would also agree with what the other said. The fact you didnt have a trial and were put in at the 'deep end' only to find that it perhaps isnt working for you at all. Isnt that the whole idea of a trial? to see if you benefit from it.

So it beggars belief why your Dr's and the Company would go ahead with the permanent implant WITHOUT knowing if it would be of benefit.....what a waste of a lot of money that was. Well it sounds like its a waste if you arent getting any relief, if anything it seems to be hindering you.

I do hope that you can get this sorted out. You shouldnt be feeling worse if anything you should be feeling somewhat better, thats of course providing it is actually helping you. But by the sounds of it, it isnt......so sorry

My heart goes out to you. This certainly is not what you were counting on.....but don't give up! Just like you said. Don't throw in the towel yet. I love what the others have said, and Fiona is right - it's so easy for us to focus in on the stimulation rather than experiment around and concentrate on whether you are noticing a reduction in your pain.
I'm sorry that your thighs end up hurting. I wonder what on earth that could be from?
I really like the way Fiona said to turn it off completely and then start out real slow, and experiment with the pulse width and amplitude. I know you've already been doing this and you're getting frustrated, but please try to hang in there. Some people have to go to several tweak sessions, so it's not unusual that you've been 3 times.

You're in my thoughts
and Prayers,
Rae

Oh yeah - I am DEFINITELY not feelin' the love from my Boston Scientific rep! I sent him an email early yesterday morning - he replied "Call you in a bit" Yesterday afternoon - some 27 hours ago. Humph!

After my implant (which is my trial after all) I posted on the raceagainstpain website that it was 9 days post op and I hadn't heard from anyone, nor had my text to the one rep been returned. I didn't even know if someone would be at my 10 day post op appt! The 9th day I finally found the card from the other rep and texted him and he met me there. Anyway, because of that post, I did get an email from Boston Scientific asking me to call their customer support number if needed. Of course I don 't use my real name online, but I did send a 'thank-you' email back with my real name. I do feel that because it's paid for no one feels like they have to do anything. I took the chance on risking my life (with all my allergies surgery is a big risk) and no one can even call me? The surgeon wanted to do the surgery in two parts: implant the paddle leads, connect them to an external unit and send me home for a week. Then come back and if the SCS was working, then implant the battery/generator. But the surgeon met with my pain specialist and the rep and determined it was just too risky for me to have two surgeries with all my allergies. So I took the risk in having one surgery - and now what? I'm supposed to guess at options to make it work better?? I don't know - if it wasn't for the raceagainstpain group and this group I would have no idea what to do or what is possible. Stinks. I'm not giving up - not by a long shot. I have grandchildren - I will bug whoever I need to bug to get help. Just wish it would be easier - feels like I am completely alone in trying to figure this out.

I think Fiona has really good advice about taking a break and turning it off and then gradually going up slowly from there. Do you leave it on all the time? Sometimes maybe your body would benefit from short breaks from it.

Also, and I don't know what your expectations are for your pain relief, but the SCS works only for nerve pain, so it wouldn't help with arthritis pain, unfortunately.

I know how hard this must be for you going through a big surgery and then not having good results Hopefully something can be figured out with your doctor and rep to give you more relief than what you're getting now.

This whole thing really STINKS!

The more this absorbs into my brain, the madder I'm getting!
Eliza, at this point I honestly believe you should actively file a complaint!
Go to the top if you can figure out how to get there and let yourself be heard.
There is NO excuse for them not providing decent follow-up care.
IMO, you are being left out in the cold....as in NEGLECTED

I'm getting po'd at your surgeon because this was a high risk surgery to begin with. Where is HE! And the Reps!
This just isn't right and I'm sorry you are left with all these questions. How disappointing this is.
Yes, I would say that if he/they don't get back with you, then go over their head and file a complaint against them, expecially the reps.

*whew* ! guess I needed to let out a rant

So, Eliza, I wonder if you are giving Fiona's good thoughts some reflection. Shut 'er down, then come back on lowish and slowly ramp up. Since you have four programs, this process would be repeated three times after your first attempt.... the concept is sound. Find out through experimentation, and write down NOTES as you do this, reflecting on what you experience, the numeric pain levels if you can stomach tracking it that way, and record your thoughts moment by moment, attempt by attempt.

THEN, it would be recorded recollection of your experience you could copy to take in to your doc..... assuming there is a follow up appointment to show empirically your data. Sure, pain is subjective, but you need documentation at some point or another regarding your good efforts at making proper use of the device.

Pen and paper in hand, get ready and go,
Praying for you my friend,
Mark56

Progress! Ok - someone will meet me at my six week post op appt Tuesday for more programming and the rep will unlock my remote so I have more options. Yeah! And I did have a good day yesterday - not so much as pain relief, but I was able to do more. I did reach a point 14? days ago where I turned the stim off completely for 4-5 days, then had programming. Since then I've been experimenting using very low stimulation with short periods of increased stimulation for 20-30 minutes. I haven't taken notes, but do seem to gravitate to two specific programs. I do wish I could "feel" less pain, less burning, but maybe the stim is affecting my brain? I want to be off the meds, and so far have dropped 10 mgs on the Methadone, without an increase in pain. So there is hope. Thanks to all of you who responded!