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One Year In

davedave Posts: 860
edited 06/11/2012 - 8:48 AM in Spinal Cord Stimulation
Today is my 1 year anniversary for my stimulator. After a year, I'm still very positional but have adapted my life to it. I go no where without my remote. It's not as effective as I hoped it would be. Now that things are settled down, it supports about 40% of my pain. I've turned my stimulator off maybe 5 or 6 times over the last year. Each time does result in increased pain..

The thing I hate the worst about the stimulator is charging. I find it to be a pain. I charge once a week on Sunday. Charging time usually takes between 2 to 3 hours.

Dave
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13

Comments

  • Dave:

    I am considering the spinal cord stimulator and was wondering if you are still taking meds? Since your pain level is reduced by 40%, have you also reduced the amount of meds you take?

    You also stated "Now that things are settled down" - what kind of things were you experiencing prior to things settling down?

    I greatly appreciate any info you can give me - I am desperate at this point in my life and need some relief fast.

    Chris
  • Dave,

    I am also interested in hearing more about your experience -- good and bad.

    Thanks for sharing!

    Dave
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  • Happy anniversary dude!!! May the Remote be with you always! :)

    It's really a bummer that yours is so positional, but 40% relief is better than no relief. I wonder if they had used surgical leads instead of percutaneous, if you would have more stability. (just thinking out loud).

    "C"
  • What is the difference between surgical leads and percutaneous? I have not heard of percutaneous yet - any info would be greatly appreciated!

    My PM doc has suggested using the SPS manufactured by Boston Scientific - anyone using this device?

    Chris
  • Happy Anniversary on your 1 year SCS experience.

    Thank you for sharing how much relief you have received and how the battery charging has been the biggest "pain" for you.

    I am glad you are getting about 40% relief, as any relief is always welcomed.

    May I ask how much medication reduction, the SCS has allowed you to have?

    Tammy
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  • I would suppose knowing my diagnosis would help in understanding what my stim is supporting. I have Adhesive Arachnoiditis at the L4/L5 and L5/S1 nerve roots on the left and right side. I have burning pain just below my knees to my toes. With that in mind, its a tall order for a stimulator to treat all of those areas. When I did my trial, we targeted the worst areas which are my calves, bottom of my feet, and toes. I've since been reprogrammed to cover my shins and the tops of my feet. None of my programs help 100% but some areas are better supported than others. My problem is progressive, so I push this thing pretty hard. The burning has gotten worse over the past year.

    I hit a cross road last year. I can't take the nerve medications and the opiates have an adverse effect on my digestive tract, more so than the average bear. My choice was to either succumb to higher doses of ER meds or try the stimulator. It's hard enough working with what I take now, to submit to higher doses would have ended my career as I know it. I have no desire to retire anytime soon. I really enjoy what I do for a living and I have 2 daughters quickly approaching college.

    My leads are at T11/T12 for the right side and at T12/S1 for the left side. Normal placement is a little higher T8 to T10, but because we were trying to reach such a wide area we opted for a lower placement. Toes are really hard to do. To answer your thought C, I don't think surgical leads would have made much of a difference. The spinal cord ends right where my leads are, so all the nerves and the cord move a lot at that spot. My actual what if scenario is "what if my leads were a little higher?". It's really not that big of deal regularly changing programs. I estimate I change programs 15-20 times a day. You get used to changing the program that it becomes second nature. Of course I do forget the nature of things a lot and my pain levels are always accommodating when I do that.

    To answer your question Chris, I take less drugs than before my stim, but I take more than when I first got my stim. Basically, I'm getting worse, fighting a loosing battle.

    Dave
  • A percutaneous lead is a long cylindrical lead that is inserted into the epidural space via a 14 gauge needle. Surgical lead are shaped much like the end of a canoe paddle and are surgically implanted into the epidural space via a laminectomy. Paddle leads are becoming more popular for lower back issues since the epidural space is larger there and the paddle leads are designed to better fill that space and provide a more consistent contact and signal. Percutaneous leads are more commonly used in cervical SCS setups due to a thinner dural covering over the spinal cord and less epidural space. Also with the motion of the cervical spine, paddle leads are more likely to fail in that area. Percutaneous leads are far more flexible.

    I have two percutaneous leads in my neck and like most c-spine SCS systems, mine is quite positional. I have learned to compensate for that and don't even notice when I am doing it any more.

    "C"
  • Before my stim I took a 120mgs of morphine sulfate a day and up to 30mgs of oxycodone for breakthru, which I used up the max on a daily basis. I now live off of 40 mgs of oxycodone a day. I've been holding off on asking for an increase for some time, a bit stubborn in that department. My goal is to make it to the end of the year at my current levels. Every day I manage at this level is one day gone and then there is tomorrow. I take my pain one day at a time.

    Dave
  • The medication information is helpful to know.

    And, like you, it's just taking it one day at a time with our pain.

    I sometimes wish it was limited to just two pain sources, which most would agree with.

    Wishing you continued success with the SCS and hopefully, less need for medications.

    Tammy
  • Dave, I guess at this one year point, 40% is better than nothing, isn't it? My one year anniversary was on Saturday (11/13). There is a part of me that is so glad I have it because it has helped me sleep better (not something I anticipated) and it has been programmed to cover a new problem that started after my SCS surgery that was prompting pain in my left arm. Unfortunately mine never did cover the pain area in my upper back that it was supposed to target. I have found that it is much more effective on the extremeties (arms and legs) than in the area around the spine.
    That is a tremendous decrease in your meds, though. Congratulations.
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