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strakerstraker Posts: 1,851
edited 06/11/2012 - 8:19 AM in Pain Management
i would like some feed back on the scs.as i am in constant pain .even on a high dose of oxycodone/norm .i am thinking about getting a scs when i next see my pain doctor
i have had a laminectomy at L4/L5 and a discectomy at S1 and a nerve decompression at L5 i have DDD and spinal stenosis .11 years of pain and counting do you have ant advice ?? many thanks tony


  • dear straker

    CINDI :)
  • thanks hun i am in the uk so insurance no problem! hope you have a good outcome re your trail.and i hope that you are not in too much pain afterwards ...thanks again tony
  • Hi Tony~
    I have had my scs for about three months now and feel like it was one of the best decisions I have ever made. I have had back and leg pain for over ten years. The feeling of the stimulation is... strange, but it really helps! It took some time to get used to. A video I watched about the scs says it feels like a gentle message... to me it doesn't feel like a gentle message, but rather a muscle stimulator-from the inside. Hopefully you have a good PM doctor because I feel that it is SO important to the success of this thing!! I'm not going to say that I am pain free now, but I will say that I'm able to do so many more things now than I was able to do before.
    Good luck!
  • Hi Cindi~
    I just wanted to wish you luck on your trial Monday. I really hope that it gives you some much needed relief from your pain! Take it easy and don't over do it. Give the thing the very best chance possible to work! Have a great weekend!
  • thanks terrie are you in the uk?

    i would like to know where you had your scs done
    i am in manchester uk
    and i would also like to know how you are getting on with your device as time gose on
    do you still reuqire loads of pain meds?
    would you keep in contact with me ?
    if so my email is tony.beer1@googlemail.com
    many thanks tony ..
  • i Tony~
    I live in the US in a pretty small Texas town... My PM doc is the absolute BEST! As time has passed, I have become more accustomed to the feeling of the stimulation. I wasn't sure I could get ever get used to it, but each day I would turn up the stimulation level a smidge and it made it easier to get used to. I am still taking pain meds, but seem to have much better coverage than before. Recently I had to make a long trip to a big hospital (six hour drive) with my dad- he had to have quad bypass surgery- and I only stopped once during the drive. We spent two weeks at the hospital for surgery and recovery, and the only time I had trouble with my pain was when I had to help my dad get out of bed or back in to bed. I never would have been able to do this BEFORE the implant. I had high hopes that I would be able to get off the pain meds, but it looks like for now I'll continue to take them. My activity level has increased so much that I have a tendency to over do it. It's almost like being locked up for ten years and then finally being released! I felt like I needed to get out and do things that I couldn't do before.
    I would so recommend the scs to anyone that is thinking about getting one. Feel free to send me a private message ANY time.I'll keep up with your e-mail address too. Good luck!
  • I can truly understand what you are going through and honestly say that my SCS probably saved my life. Living with chronic pain is very challenging and stressful at times.

    The thought of living another 20-30 years longer with things getting worse is not acceptable. You need to take charge of your future, like I did, and try every alternative.

    My SCS gives me the temporary relief I need to get up in the morning and continue to function in my job. I am too young and unprepared for retirement so I need to work full time. Without my SCS that would be impossible especially if taking drugs was the alternative.

    I strongly encourage the trial. If that works out jump right in and get the SCS installed. After the initial brake in period of a few months you will be very happy you did.

  • I had a Medtronic SCS implanted 1 year ago this week and it saved my sanity! After 4 failed back surgeries (including fusion), and a neurosurgeon 'acidentally' chopping up the nerve roots to my left leg, I lived in constant agony. I couldn't sit, walk, lay down, clean, cook, sleep, drive, without pain. Everything was painful. I am 35 years old and a stay at home mom to 2 young girls - I can't exactly take 'time off'. I had the SCS trial done and cried when they took it out because I loved it so much!

    Although I continued on serious pain medication for several months after the implant, I have gradually weaned off them and am now on NOTHING for pain.

    I would warn anyone considering it that it is not a cure. Do not expect to be pain free. (It took care of about 60% of my pain.) It's like having a headache instead of a migraine - at least you can finally function. And you have to charge it, play with the remote to get the settings right, take extra time at the airport, sit with Medtronics rep. while they help you get the right stimulation in the right areas. But when you live with chronic pain for any amount of time, you will agree it's worth it to get relief!!!

  • i am still in agony carnt sleep /yaking large amounts of oxycodone but i have to wait 12 weeks befor the scs pain doc can see me! what am i going to do befor that ?? turn the pain off!!...i am in heel right now i never thought things would get this bad..but all i can do is wait .thanks again love to you all tony xx
  • It's been a very long wait for me on several medical issues. Things are finally coming together now. I have my surgery date for SCS implant (did trial) Aug 12.

    I know it' frustrating! If you need some information or just want to talk to someone who has gone through it, we all are here for you. You are also welcome to PM me if you like.

    I currently take oxycodone and have the Fentanyl Patch, still in pain though.

    Wishing you pain free days or even an hour!
  • I have had my Medtronics rechargeable unit since December 3, 2007. I have to second the comments about getting some of our lives back. Mine has given me a second lease on life and I am now able to do things I haven't been able to do in over 13 years. It is my little miracle machine.

    I hope this is so for you, too. Best of luck to you.

    Amy :)
  • hi love the tattoo!!.is it yours?..i am glad that you are having less pain and can do things that you have not done for years..due to your pain..i am goint to see about having a scs within the next 12 weeks.i just hope that i am a suitable paitiant for one ..as i am in a right state at the moment .i am unable to do the most simplest of things with out being in teribal pain..i feel very old!!.all i do is lay in my recliner and take pain killers..not much of a life for a 42 year old married man..sorry to here about your husband{my wife lost her father by suicide 7 years ago so we know a little about that kind of pain too}..thanks for the advice you can always email me if you want a private conversation tony.beer1@googlemail.com..godbless tony
  • Hi Straker, I have a very best friend that has had the spinal cord stimulator for 3 years now, and according to her the amount of pain relief she is getting from having it is AMAZING :O She says she will never give it up. But she also still has to continue pain medication but not nearly as much as she did before the SCT. Also, you need to be aware that there is a box (size of cig. pack)that is in your back just under the skin that will be there permenant, or as long as you have stimulater. also, the battery in the box has to be changed every 5 yrs.(for her)which is a small surgery to take box out,but it's fast, but none the less it's a surgery. The box can also be uncomfortable to lay on at night,or even how you sit can be uncomfortable as well. When driving it's hard to turn your head and look over your shoulder,or to twist in that motion, all due to this box. So that takes some adjusting to get use to. You also have a small remote control box you keep with you all the time,in pocket,etc;; and thats how you control the pain through the stimulator. The surgeon sets it at a certain level that will control your pain and as you go along and you feel uncomfortable or maybe a worse pain day than others, then you can turn the remote differant levels until you feel relief. Also, If your real thin then this box that stays under the skin will be very uncomfortable on a daily basis,until you really get use to it or as much as you can anyway. Thats the most complaint my friend still has about hers is finding a comfortable position to sit or lay in when she is trying to relax or sleep.Where theres a will Theres a way :) I guess. I hope this info. has been helpful to you, and I wish you the best of health and luck with this. smallfrie
  • I'm really surprised your friend has such a large implant. Are you sure it's a SCS implant? A pack of cigarettes is HUGE compared to the size of implants on the market, even 3 years ago.

    I have the Medtronic implant and it's only about 1 1/2 inches tall, 2 1/3 inches wide, and 1/3 of an inch thick. It's about the size of a pocket watch and much, much smaller than a pack of cigarettes.

    I've only had my implant a couple of months and now that the incision pain has gone away, I hardly notice the box. In fact, I have to struggle a little bit to find the box and get my charger lined up when I need to recharge it.

    The way you describe your friend's implant, I don't know that I would have gone through with it, even with as much relief as I get from it! My trial stimulator was about the size of a pack of cigarettes and I can't imagine having that implanted permanently. :?

  • Yes.... she (the tat) is mine. She is on my left upper arm and I love her!! I love the old time pin-up girls and she represents me. She's tough but sexy and cool.... ready to take on anyone or anything. All of my tats have a deep meaning for me so you won't find any silly little cartoon characters on my bum or anything... lol.

    On my right arm I have alot more art. I am working on finishing it as a short sleeve. I have Kanji symbols for the rat and the dragon (my kids zodiac signs) next to the signs for son and dtr. Then there is a large Koi fish with a lotus flower below that... it's huge and also a fav. In Japanese fables, Koi fish eventually become dragons. It represents my strength and constant changing. The Koi starts slightly below my upper arm and ends above my elbow. It's hard to get a picture of it since it is my whole upper arm but I will try to and then upload that pic too.

    As far as the stim goes, I hope and pray that you are able to receive one as well. It really is a miracle in a small box. Thank God for the technology.

    Thanks again,

    Amy (~the Buns~)
  • I posted a link to another thread about SCS...I know C personally , she is one of my best friends and she is doing great with hers...better than she even thought she would do. Anyway , I thought that maybe you could hook up with C to ask questions , she is great at helping others out. I hope this helps....please keep us posted as to what you decide to do and how you are doing.....take care....Miki

  • I'm in London and was told yesterday that after epidural injections and pulsed radio frequency that didn't work that my options were either a third surgery or a spinal cord stimulator. My consultant told me that it wasn't curative that it may help for a short term but I'm sent to another surgeon for a review to decide what's best.

    The thoughts of either scares me and I just don't know if I like the idea of a SCS but I really don't want a third op either. I've been on different meds which haven't really worked and have left me feeling crap.

    Are you having a SCS?

  • it looks like you and i are at the same point in time regarding scs..i too have had 2 ops both failed .the last one has made me a cripple! the pain from my lower back is hell and before the op i only had pain in one leg now i have pain in boths legs!.on the 19 aug 08 i am having an epidural ..never had one before hope it works because i carnt go on as i am .i am waiting for an appt to see weather i would be suitable for an scs.i an having second thought though because my pain is a 50/50spilt back/leg i have been told that a scs wil not do anything for back ache.some ppl say they have a flare up regarding pain ..i dont! i have pain 24/7 it never goes away.only the oxycodone takes the top of it.but i am taking so many of them at the moment.just to stay on top of the pain..i dont know what to do .i have never been so ill in all my life.i spend all day on my recliner not because i am lazy its because i am in so much pain..i hate it!! i will shut up now and try to get my 3 hours sleep before the pain team stick me in the back with a bloody big needle!!.good luck to me STRAKER
  • Before I had my second Fusion at L5/S1 I went to see a Chronic Pain Physician about this device and he suggested this to me . I later found out I had fractured the First Fusion and set about getting it fixed . The Sciatic Pain however has not eased and I am in a lot of Pain . I am very sensitive to any medication and this makes my positoion very delicate. I was given all the information , including a video on this device and I only read a little and did not watch the Video . Can't find it , looked everywhere. You have helped me understand what this device is all about and I hope soon that this opportunity comes my way again . This Pain is so hard to endure . Good luck and I hope anyone who is about to have one installed the greatest of success. It sounds awesome !
  • I know that the stimulator is quite expensive, but, a little relief from agonizing pain is better than no relief from agonizing pain. I have had my scs since March and it has helped me in more ways than I even realize. My dad had to have bypass surgery in June and I spent 2 weeks at the hospital with him, after driving 6 hrs to be there, and slept on these chairs that pulled out into a cot. I NEVER would have been able to do this BEFORE I had got the scs. I wouldn't have even been able to make the drive. Does it take all my pain away? NO, but it does ease it enough to allow me to do things that I wasn't getting to do. I have sciatica and back pain too. The scs helps with the sciatica A LOT, the back pain- not as much. I was afraid that my doc would stop treating me with meds after I got the scs, but he didn't. He realizes that I'm still in a lot of pain and he wants to help as much as possible, Thank Goodness!
    Good luck with your next treatment and with your decision about the scs. Oh yeah, I don't know where it's posted on this site (ask a moderator) but I watched a video that someone had posted about the implant surgery. If you can find it, watch it. I thought it was VERY helpful!
  • Arising this morning in Austalia , tears to think of another day with this reched agony.The sensitivity I have to medication is my greatest obstacle and I have been suggested as a candidate to have this implant. I have had this pain for three solid years now and two massive lots of Surgery both Anterior and Posterior, I also have an Artificial Disc at L4 to. Anyway I spent all night trying to find the information pack and video but I guess I threw it out thinking my last Surgery would fix my problem. Wishful thinking , damage done I think . Ok , will look for Video and I have to go to the Doctor tomorrow so will talk things over with him. Can't go on like this. Even when I am on heavy Meds I feel like I have a rod stuck up my left Butt Cheek.Living with Hope always and Thanks so much for your reply Terri
  • Hope you have success and I will be watching to see how you are doing . Thoughts are with you. Anything is worth a try when all other has failed. There is no quality of life in this pain.All to gain and nothing to lose , bar the pain.
  • I had the trail stim put in a week ago. I go to have it taken out today. I do feel like it gives me a considerable amount of pain relief. I have been able to DRASTICALLY reduce my pain meds. I guess you get used to the pulsing sensation. Mine is in my neck. However, when I turn it on it feels like it goes down to my leg. I don't get the stimulation feeling, I just get kind of a knee jerk reflex reaction and I seem to walk a little bit clumsily. Also since it is in the cervical region, I have a lot of variance in the strength of the stim depending on how my head, neck or body is positioned. Has anyone had a stim implanted in their neck? Medtronic has just came out with a new RestoreUltra that is rechargeable and very small (2 1/2 in diameter and only 9mm thick). I was glad to read where someone responded to a post about their friend having a stim transmitter about the size of a cigarette box and how uncomfortable that was. The response was that their's was really rather small, hardly noticable at all and not uncomfortable. That was one of my concerns.

    Can someone tell me what the drawbacks have been for them with the stim? I feel a little disoreinted, unfocused and clumsy. Does this go away?

    Any input will be greatly appreciated!!

  • Hi M

    Welcome to Spine Health. I have a Medtronic Restore Ultra in my C-spine. Just keep in mind that the trial stim leads are only tacked in at the skin, so they move around ALOT! Once the permanent leads are placed, they are a bit better. Since your neck moves so much more than any other part of your spine, it is very difficult to get a constant stim like many do with the ones placed lower.

    C-spine stimulators will stim down to your toes, depending on which contacts are activated on the leads.

    I go around with my butt, legs and feet buzzing all day long and have no problem with clumsiness. In the morning or when I turn it up higher, initally I get the feeling I'm being cut off at the knee. Not painful cut off, just majorly restricted. It eases up after a few minutes.

    How soon until you get your permanent implant?

    Please feel free to PM me or email me at haglandc@toriitraining.com

  • I have read so many good posts in regards to this form of pain mgmt. I had an in depth interview with the shrink, who also works for Medtronics. I am scheduled for 8:30. From what I understand the procedure last 3 hours. I will have anesthesia but will be awake when the leads are attached. For those of you who have had this procedure, how was your trial? Were you able to drive, shower, do laundry and other "normal" things during the trial?

    Any info would be greatly appreciated.

  • Karen,

    I was unable to shower during the trial with the exception of my lower half of my body and a hand held shower. Needed help to since I had external generator. Fortunately my trial was only 3 days. Here's a photo of my trial scs. Mine is a c-spine. The box is a connector.

  • I just had my trial last Monday (Aug 18th). Mine was in the cervical region. I wasn't able to take a shower or real bath, but I found that I could sit on the edge of the tub and take a pretty good "sponge bath". I was even able to bend my neck over my bathroom sink to wash my hair. My neck was EXTREMELY sore for about two-three days after the trial leads were implanted. The Medtronic rep said that wasn't a common side-effect. However, I have had two previous fusion surgeries and developed a good amount of scar tissue. I truly believe that this is what really added to the pain issue, but my PM dr. told me that any type of pushing and prodding in the cervical region is enough to cause pain. I had a very hard time driving for the first few days because I had limited neck ROM. However, I found that by taking an anti-inflammatory like Naproxen really helped. The leads were placed high in my neck and I didn't feel that I was getting optimal results, plus with the pain that I had in my neck from the procedure, I didn't feel that I really was able to tell if it was working or not. So instead of taking them out after three days, my PM lowered one of the leads (I had two, one on each side) and gave me over the weekend. I could really tell a difference on the side where the lead had been repositioned. I work at a scrapbook store twice a month and Saturday was my day to work. Other than being a little tired, I was able to work the whole day. I did have to sit once in a while, but it really wasn't too bad. I was also able to do more of my scrapbooking hobby than I had in the past. I used to be able only to sit at my desk for about 30 minutes. With the stim, I was able to sit and scrapbook for almost 2 hours!! Big improvement!!

    You will need to take it easy. Don't be lifting anything over 5-10 lbs and try not to do heavy housework and/or laundry. This is a good excuse to get out of the day to day chores. If you don't have someone to help you, just don't worry about it. It isn't going anywhere and you can deal with it later. You may feel like doing some of this, but try to take it easy. Pretend like you are on vacation... Well, if you can't go that far, just do the absolute necessities and NOTHING more!!

    Mine trial went well, but I did have some questions and got some answers from another blogger on the post. Let me know how it goes for you. I will keep you in my prayers. Feel free to PM me or email me at cobb.michele@yahoo.com. Good luck!! (but I don't think you will need it...you will probably be amazed and then mad when the trial is over!)

  • I think you need to seriously consider the scs treatment!! I was in pain for over three years. After two surgeries and two steriod injections series, I finally decided to try the c-stim. I have only had the trial, but am waiting for my PM to let me know when the real surgery is scheduled for. The scs is not a permanent thing even if you do get it implanted. It can always be removed. Medical technology is moving at a fast pace and there may be something new in a few years, but why live another few years in pain!! You only have one life and if this will offer you a chance to reduce the pain and get your life back, you need to do it!! At least there is a trial period. You don't have to commit until you know for yourself if it is going to work. Let us all know what you decide to do.

  • Totally cool that you posted that picture! I'm sure others will be thankful to see it! I had absolutely had no idea what to expect. Hope you're feeling well!
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