Next step after an SCS Failed

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alan9j
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/22/2008 8:44 PM (GMT -7)   
Hi all,
I am new to this forum, but I have read a few posts on here. I have chronic back and leg pain and just had a trial SCS removed after not getting much relief (20-25%) which i was told was considered a failure and I have to agree that it was not the relief I thought it would be, especilly if I had much activity, anyway I am considering the pain pump (medicine pump), because it is supposed to be better than taking all of these pain meds. I have Degenerative Disc Disease and Severs Arth. in my spine (L3,L4,L5) and I was hoping to talk to some people that have The Pain Pump and what they think of it. Any comments would be appreciated.
Thanks
Alan9j

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 8/22/2008 9:13 PM (GMT -7)   
I bumped up a previous thread. Hopefully that will help you. :)

Sorry to hear the SCS didn't work for you. I think you made the right decision. I have one & love it, but I got quite a bit of relief from the trial.

take care,
frances

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/22/2008 9:20 PM (GMT -7)   
Hi, Alan,
Welcome to the HW forum. I'm glad Frances pointed out another thread where the pump was discussed. I don't know much about them other than what I've read here. You may want to search for other older threads for infol., and I'm sure those who have pumps will chime in.

The SCS and the pump, like everything we do to manage pain, seem to vary widely in their success so because one didn't work for you doesn't mean the other might not.

Glad you joined us!

PaLady

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 8/23/2008 5:09 AM (GMT -7)   
20- 25% increase in relief is a failure?? Wow that would be a gift from heaven for me!! I have been given the option of the Stimulator and would love it if it gave me that much relief. I have been told by many not to expect miracles from the Stimulator and do not expect them really but if I could bring my pain from a 8-9 to a 5-6 I would be thrilled. Just enough to where I could function each day without being in the horrid pain that I relive every day. Let see if I got a 25% relief from the Stimulator than that would mean my pain would go from a 8 to a 6?? Maybe a 5 or a 4?? Wouldn't that be great???

I do not understand how they can say that it is a failure if it is giving you 25% relief. Were you up and around more? Doing more things then you were able to do before the stimulator?

anyway that is my take on it.

Scarred
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 8/23/2008 12:30 PM (GMT -7)   
Less than 40% relief is generally considered a "failure". One thing to note is that the trial tends to produce more relief than the permanent implant, so besides the fact that insurance generally won't cover it if it's under the 40% threshold, it would likely not be worth the pain & risks of surgery for that level of relief. Also, the SCS will only lessen the pain at the specific level where it is attached, so it's not as if everything becomes much easier. In my case, I can use it for base of head/top of neck pain (where they meet) plus one line of shooting pain down my right arm and also if I turn it up high enough I can get my hands & feet. It is about "50-60% better" **in the areas it affects** when I turn it on (8 to 4/5, 9 to 4/5). I can hold a conversation & sit at a computer to type now, but it doesn't mean that now I can go walking or do a bunch of housework and stuff and not pay the consequences of doing that. The pain around my temples, jaw line, low back, etc. is still at 100% (8/9 is still 8/9) because the SCS doesn't touch those areas. That means that overall my pain scale rating is maybe improved one or two levels by the SCS (8 to 6/7 or 9 to 7). I agree that that is a *huge* improvement, but I just wanted to be clear that it is not like pain meds which act on all your pain. The SCS will only work on one specific area.

The reason there are thresholds for how much pain it needs to relieve is because the SCS is extraordinarily expensive. The device itself is $8-10K and then there's the surgery & follow-up on top of that. Generally altogether it runs $20-40K. In my case, the cost of major neurosurgery (removing part of my skull & top vertebrae) ran less than half of what the SCS implant cost. For better or worse, insurance companies are in the business of making money, so if they don't feel they can recover their "investment" in the SCS through fewer office visits and fewer minor procedures like injections or RF they do not pay for the implant. Beware about overstating how much relief you're getting, because then the evil insurance people start calling you & sending you angry letters about why are you still on so many meds/still seeing the PM every week after having the surgery. The insurance people suspected I was dishonest about level of relief during the trial b/c I was having a hard time healing after the procedure & needed extra visits/more meds for several months afterwards. My PM & PCP wrote off a lot of the bills I had over the first few months, plus they had to submit a ton of documentation going years back showing that I've always had very slow healing times plus they had to run all sorts of extra blood work to prove that my sed rate was super high & that I wasn't lying about the relief and we weren't making stuff up. So aggravating! >:| Eventually my docs did get some of their bills covered, but trust me when I say that it's hard enough when you're being honest about how much relief you're getting. To play games just to get the implant would not be worth it b/c they've got all these stupid actuary tables that show norms about if you have_____ relief from the trial you're supposed to have _____ fewer meds and/or _____ fewer office visits; if you don't fit the norms you will have major probs and may not be able to see your doc for a long time afterwards.

I know it's frustrating to not have something work out. It's a tough balance wanting to keep our insurance premiums lower versus wanting every possibly treatment available covered no matter the cost, but that's the reality of it. The pain pump is less expensive & should be easier to get approved. It's also centrally acting, so it would probably help the arthritis much more than the SCS can.

good luck,
frances
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