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Typical Questions and Answers on Spinal Cord Stimulation

24

Comments

  • Hi
    Yes IMHO there are a few times in which are like landmarks on your stimulator.
    One month after implant was a improvement. Next was six months has the paddle scars in and then again at one year it seems to be more solid and programming seems to stay the same. All through this process reprogramming is important when ever needed. Do not be afraid to ask for it. I had my second unit implanted about eight weeks ago and just had the first reprogramming done and just small changes were made. Find out how many changes you can make on your own.medtronics is pretty simple Boston locks some out unless they feel you know what to do.
    You say your falling a lot. That worries me because it can move your lead which isn't a good thing. If you do fall and your coverage changes a lot contact your rep and let them know.
    Later the paddle will scar in and might even become non moveable which is great if it's in a good place.
    Anyway good luck hope it works for you. I have no idea how much damage you have but it took me four years before I gave up trying to work. If you get the coverage you need who knows what you can do in the future. Never give up.
  • Hello. I am considering neuro stim and hoping for the peripheral subcutaneous variety (trouble with the insurance company -- "experimental") , but may just end up with the traditional SCS. Regardless, the implant is the same. While I would do anything for pain relief (mid/high back) after 4 years of this and a failed fusion, I am wondering about the aesthetics. I am thin and the surgeon told me that the implant would show through the skin. I have some anxiety around this because I think (and hope!) if I can get my life back, it would include athletics, bikinis on the beach, dating, etc. I know this sounds superficial and it truly won't change my mind if this is something that provides relief, but I still wonder about these things. I would appreciate any comments/advice anyone may have. Thank you!!!
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  • chrelseycchrelsey Posts: 90
    edited 01/25/2014 - 8:38 AM
    I received my Medtronic SCS one month ago yesterday, and here are my thoughts.

    First, the pain relief has been incredible! Seriously. I am experiencing between 60-75% pain relief. I've been able to step down from taking Oxycodone, and am now just on Hydrocodone. And over the next couple of months, I hope to be off of that entirely, except as needed for any breakthrough pain. I, too have had surgeries, procedures, ablations, etc. My normal pain level for YEARS was a 7-8 on any given day, and now I would say it is a 1-2. I hadn't slept in bed for longer than an hour at night - also for years. Just last night I stayed in bed for 7 hours before having to move to the recliner. That is HUGE!

    Now, about the aesthetic issue. I am not thin, and I am not overweight. I am working on getting off 10-15 lbs, but I don't have a lot of extra padding on my back where they put my unit. I feel it sticking out, but when I point it out to my husband, or say "Look! Can't you SEE that!" He tells me that he can't tell at all. And, he's not just being nice (although he is a sweetheart!), he is just being honest.

    All of that to say, I'm not sure what it will look like on your frame, and if just you will be able to tell, or if others will as well. For me, personally, I am just so glad to have pain relief, that I don't care if anyone sees it. And if they should, hey - what a great story! My son - who is 27 - loves to say that now I'm his cyborg mom!

    Anyway - keep us posted on what kind of implant you get - should you get one - and how it is doing for you!

    =Becky
  • hopetogetwellhhopetogetwell Posts: 34
    edited 02/02/2014 - 12:43 PM
    Thanks so much for sharing your experience. I know the pain relief is the most important....it's really the only thing! But, I let my mind get ahead of itself and consider what my life will be like as a pain free (or less pain) person, dating, etc. as mentioned and conjure up thoughts that a potential mate would be horrified by this "thing" sticking out of me. Also, I was always the girl who worked out with the guys at the gym for heavy workouts, crossfit, etc. and it became a lot of who I was and I want that again....in all my same clothes...nothing sticking out of them. :) All I can say in my defense is that I've been in such severe pain for so long and want to have a normal life so badly that, perhaps, some crazy comes out. :) :). The fact of the matter is that nothing exists now that did before and I will have to rebuild to get friends again as well as to get back out in the world. Essentially, square one. That said, I realize that I am putting the cart before the horse with these thoughts, big time.

    I can't even imagine being at a 1-2! That's amazing and I'm so happy for you, cyborg mom (that's so funny!). I'm glad you have that kind of support from your husband and your son. I'm quite sure I would be less concerned about the aesthetic part of this if I already had a boyfriend/husband and some kind of support.

    Okay, the update: My neurosurgeon had the "peer to peer" consult with the insurance company doc yesterday and they approved the subcutaneous peripheral stim (Boston Scientific) even though they stand by their "experimental" assessment. Apparently, however, they have stipulated that my trial will go a full 3 weeks and require other modifications that I will find out about on Monday. I don't have a firm grasp on the restrictions during the trial other than I know I can't shower ....good grief....for 3 weeks. Also, I am on the calendar to get the trial on Monday, Feb. 10. Regardless of how I feel about any of this, the reality is that I can't survive without pain relief. Although, I take some pain pills that I have been prescribed over the years from the "leftovers", on occasion (hoping for any relief!); I stopped getting prescriptions and taking anything regularly and even went 4 months taking nothing. The fact of the matter is that the medicine doesn't help my pain.

    Thanks again for sharing.....it helps a lot!!

    Amy

  • I am having surgery on Monday. I just got a call from the hospital today and they asked me if I was staying over. I then told her that I didn't know, was I? She said the doctor reserved a bed for me and it could be possible. I asked her how I would know and she told me it depended on how I felt. Won't I be on pain meds and not really know how I will feel. My surgery is in the morning. I am getting my leads put in up by shoulder blades and neck. Not sure if that makes a difference. I also have a 45 minute ride home. Any suggestions? Kind of confused.
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  • chrelsey said:
    I received my Medtronic SCS one month ago yesterday, and here are my thoughts.

    First, the pain relief has been incredible! Seriously. I am experiencing between 60-75% pain relief. I've been able to step down from taking Oxycodone, and am now just on Hydrocodone. And over the next couple of months, I hope to be off of that entirely, except as needed for any breakthrough pain. I, too have had surgeries, procedures, ablations, etc. My normal pain level for YEARS was a 7-8 on any given day, and now I would say it is a 1-2. I hadn't slept in bed for longer than an hour at night - also for years. Just last night I stayed in bed for 7 hours before having to move to the recliner. That is HUGE!

    Now, about the aesthetic issue. I am not thin, and I am not overweight. I am working on getting off 10-15 lbs, but I don't have a lot of extra padding on my back where they put my unit.
    =Becky
    I just finished my trial and had basically the same results as you for relief. I also have the same general goal with weight. Right now, it feels like I am slipping back into a pit I just climbed out of. I can't wait to get through the perm implant surgery now!
    Murraytscan@yahoo.com
    L4-L5 fused at birth (congenital malformity). L-5-S1 bulge/degeneration, L3-L4 bulge/degeneration. Permanent nerve damage L5-S1 and L3-L4. Fused C5-C7.
  • Mid-high back is not the best stimulator coverage area. When my doc (and some of you may know that the doc I use at Emory has written the book on stimulators but there are many who are well qualified) talked to me about where my pain was and what would work, he placed his hands around my waist and asked me if pain was above, at or below where his hands were. I said it was all lower and he said Great! Middle/upper back doesn't tend to get best outlook. PM me if you need more info. Kathy
  • I have been recommended to try SCS for my pain relief. Good days for me my pain is 5-6. I've had injections, ablations, etc. with little to no relief. I have had fusion of L3-L4 and L4-L5, with complications, so am doing everything I can to avoid more surgery. Those that have had SCS have you had long term relief, or only temporary?

    Any insight would be appreciated.
  • jiffrey said:
    I just got my implant on 07/26/2013 and I am in the first stage of recovery, thank goodness for ice it has helped. I have notice that as the pain from implant leads goes down more pain from the battery implant, hoping ice will cure this. I have been using the device and have slowed considerably on pain meds. I will be seeing the St Jude person to go over more control options. I have crossed every thing I have in hopes this gets me off pain pills for the most part and back to a more active life style and work life. Fusion from L3 to S1.
    PLUS I am fused at C5 to C6 just for fun.... YOU give me hope since you are the first I have read with nearly as many fusions. Did you ever have bad pain from back muscle pain and spams as well? Did this device help with that? That is the pain that is destroying me. But every single time I get ready to sing on to my pain managements insistence for me to try this, I panic and back away after reading Wikipedia and other links to nightmare scenarios.. I honestly can NOT bear one single additional mistake. I just can't....
    Fusion With Hardware C5/C6
    Fusion With Hardware L3 THROUGH S1
  • Bill85308 said:
    I have been recommended to try SCS for my pain relief. Good days for me my pain is 5-6. I've had injections, ablations, etc. with little to no relief. I have had fusion of L3-L4 and L4-L5, with complications, so am doing everything I can to avoid more surgery. Those that have had SCS have you had long term relief, or only temporary?

    Any insight would be appreciated.

    My SCS has been a HUGE success. I got it in May of 13 and I continue to have relief.
    Murraytscan@yahoo.com
    L4-L5 fused at birth (congenital malformity). L-5-S1 bulge/degeneration, L3-L4 bulge/degeneration. Permanent nerve damage L5-S1 and L3-L4. Fused C5-C7.
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