Originally Posted by zookester

Hi Moosey2me,

lol.. they aren't trying to determine if you are crazy.. this is typically required by the insurance company. It is another way to ensure that you have been informed and understand the goals of therapy/treatment. It is also to ensure that if the pain you are enduring is causing lack of sleep, emotional and mental disturbances that those and other areas are addressed through medication or other modes of therapy so that you gain the most benefit from the SCS. For example if you aren't sleeping well (like most of us) and also suffer with any level of depression (as expected when in chronic pain) then something like amitriptyline could be recommended or increased if you are already taking it or something similar. The reason for this is that if you aren't sleeping well then you won't be able to cope as well with pain so they are trying to help you with things that the SCS won't help with. Try to look at it more like a check and balance instead of in a scrutinizing way. They also want to ensure you understand that this device will not relieve you of all your pain. The goal is generally a 50% reduction from your average daily pain. They should also explain that if you have multiple symptoms (ie., burning, sensitivity, swelling, knife like/lancinating & electrical pain) that it may only help with one or two of these symptoms not all of them. They might also explain that you will get the most relief out of it early on and like with medications the effectiveness tapers off over time. Reprogramming it or changing the herts/amplitude on it regularly helps keep it working more effectively. They explained to me that turning it off here and there also increases its effectiveness and believe it or not shows you very quickly how well it is actually working.

Another thing they went over with me was how it might feel very strange to have a foreign object in your body at first. I didn't understand what they meant until after my permanent one was placed and then "I got it" .. to hard to explain but it was a strange feeling in the beginning.

Like with any procedure there are risks with infection etc., so they will go over that in more detail as well (or they should).

My personal experience with the SCS: I am thankful for it each and every day! I've had mine in since July of this past year and without it I can barely walk. With it I can walk with a much less severe limp. When pain ramps up throughout the day I turn up my stim.. and believe me it helps. Does it take all my pain away? NO and yes it was more effective in the beginning than it is today. I would say generally I get about a 20% pain reduction and even less at times, but in comparison to the pain I am in when it is off or where I was without it that relief is immeasurable! It helps much more in the areas of spread rather than in the original site of onset. Honestly, I didn't realize how bad my opposite leg was until one day I had to turn the device off for a couple of hours.. I was shocked at how much the stim was covering the pain in that leg. I don't recall where your CRPS is located, but something you might discuss with your doctor is placing the additional wires and programming so that if you do get spread to the opposite limb (which is common) that you have the ability to adjust your stim accordingly.

One thing I have noticed about the SCS and CRPS is that it seems to perform better for those affected in their legs rather than arms. Just a personal observation of course. I remember reading somewhere that it is more difficult to place the wires precisely in the thoracic region but, that is all I remember.

My recovery was a breeze after the permanent was placed. I only had a slight issue with swelling that caused for a little closer monitoring for infection but it healed without issue. The draw backs for me are that I can feel the battery that is placed in my upper buttock and causes discomfort in certain chairs or clothing press on wrong. My leads are visible as well mostly that is annoying for my husband (lol) and not really a both for me. I am very small framed so that might not be an issue for some. I also hate having to tote around the remote and charger.. I never carried a purse much so this has been an adjustment for me.

I actually keep it buzzing away 24/7 and only turn it off while I'm charging myself..lol.. Oh.. and the permanent was much, much better compared to the trial. Adjusting the stimulation takes some time, something I don't feel can be done during the trial phase.

I really hope this helps - feel free to ask any questions and I hope if you decide to go forward with it, that it helps you in a positive way.

Best wishes,
Tessa