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Advice on Spinal Cord Stimulator

Jane28JJane28 Posts: 1
edited 08/08/2015 - 8:37 AM in Lower Back Pain
I had a spinal cord stimulator implanted two weeks ago and, unfortunately, it has brought me no relief so far. The Medtronic rep told me I have to wait an additional four weeks so they can adjust where the electrical impulses are going. That would be because the scar tissue over the incision has to heal. I am totally depressed about this and was wondering if anybody else has had this problem. Please let me know. I have pretty much everything wrong with my lower back that could be wrong. No doctor wants to attempt surgery and my worst pain is from the buttocks down my legs. It is very painful to stand up straight, although I try very hard to do so. Any elp would be very much appreciated.

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  • I had my SCS implanted in 2013. Early attempts at programming were very disappointing and I was very depressed. Docs kept telling me to be patient and to wait for it to scar in. I didn't really get what they meant. In the early days they could only get stimulation on my left side with a tiny amount on my right side. The pain pattern was always the opposite of what I needed. I did find that if I turned it up as high as I could stand it for a little while that it did distract my brain and that was useful sometimes but when it was turned up my brain sort of lost contact with the motor nerves in my legs so I couldn't actually move them. Needless to say - I was disappointed and depressed and my dreams of being free of the dreaded opiates never materialised.

    It is now almost two years down the track. The paddle leads have scarred in and at last week's programming session I finally got coverage in both legs at the same time and was able to cover a good part of my pain pattern. I still have the same issue where at times I need to turn it up high and can't move my legs when I do that. I also have problems sometimes when I have had it on too high for too long where it sometimes overstimulates the nerves in my feet. This makes them start to burn and I have to turn the unit off and hit the pain meds but overall - it's a help.

    I have serious pain issues in both my lower back and both legs down to the feet. The stimulator has never been able to cover both my legs and my spine so I have had to accept that I will always be on pain meds. The stimulator helps reduce the amount of times I have to reach for breakthrough meds. It's just one part of a multi-pronged approach to managing my pain.

    Listen to your docs and to the rep - the leads need time to scar in. It's not unusual for it to take a year or more before you see the full benefits. Hang in there - it will improve over time.
  • CherylCCCherylC Posts: 185
    edited 08/08/2015 - 4:19 AM
    Don't be in a hurry to push for surgery on your spine. Most times it does not cure the pain and it can often make things worse than they are now. Surgery is necessary if there are serious stability issues. My neurosurgeon told me before my first surgery that, while there was a small chance the pain would improve, it was not his primary focus. His job is preserving functionality. I have a pain management specialist whose job it is to find the most workable solution for managing the pain.

    I tried many different options before having surgery including repeated cortisone injections (2008 and 2009), 3 x attempts at radio frequency ablutions (2010 and 2011) , and finally admitted defeat and had spinal fusion surgery. Complications in my first fusion surgery (2011) left me with permanent nerve damage in my left leg. Second surgery (2012) added another level of fusion and tried to deal with issues from the first surgery but more complications left me with no disc and no spacer between L4 and L5 - just a big hole and a hope that I might achieve a solid fusion in about another 5 years or so. Third one (2013) was to implant the stimulator. Fourth (2013) one was to replace a faulty lead in the stimulator. I had a year off in 2014 thankfully but have just found out that I have to have yet another surgery within the next few months because, while bone has started to grow in the big hole, some of it growing where it shouldn't be so it is impinging on nerves on both left and right sides and so it needs to be removed.

    I am worse off than when I started. I can no longer work and I have way more mobility issues than when I started.

    Not everyone has a nightmare story like me - some people have terrific success but ... If you can manage your pain through other means (meds, SCS, a good rehab program etc) you are far better off.
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