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Spinal Cord Stimulator

ldmobleylldmobley Posts: 36
edited 06/11/2012 - 8:36 AM in Pain Management
Hey all!!

It has been awhile since I have posted. Thought I better give an update. :)

Well, I finally got my trial stimulator put in August 31, 2009. After the initial soreness of putting it in (which hurt like #$*$!!) I felt GREAT!! I went from taking 5-6 pain meds a day to only taking one the day before I had it taken out and none (that's right NONE) the day I got it taken out. I truly believe my trial was a success!! Now I am having to deal with the pain all over again. I don't know why but it is magnified like 100% since they took it out. I am having a VERY hard time getting used to the pain again. I start shaking it hurts so bad. I am definately back to taking the recommended dose of pain meds. They have me scheduled for my permanent implant on September 23rd. I had to have an MRI done to make sure my epidural space will be able to handle the permanent paddles. They are worried being that I had such a hard time getting the trial leads in. I go to the doc on Sept. 18th to get my results of the MRI. I am praying that things are still a go for the surgery. I don't think I can handle this pain too much longer. How did I ever handle it before the trial? I am SO ready to get back to the state I was in during my trial. I am hoping and praying that the permanent SCS works as well if not better than the trial. It was a miracle for me.

Have a GREAT day!!
L Mobley


  • dilaurodilauro ConnecticutPosts: 9,868
    I think this has recently become the most discussed treatment that has appeared in the forums here.

    This is a good video that Spine-Health provides:
    SCS Video
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Right now Iam only on with insurance so the SCS would be $2000 out of my pocket which I can't afford but I was just put on SSD in January so in January of 2011 I will have medicare. My question is, are you on SSD with medicare and if you are what is the out of pocket expence on medicare, Iam praying that when I am able to have medicare I can afford the SCS so I can get off the medications for pain that Iam on and try to live a somewhat more normal life. Would like your in put if you know the answer.
    Thank you
  • I will keep you in my prayers for the MRI results & the upcoming implant? I am going through the trial right now & the first 3 days I felt really good but now not so much. I think the reason for this is because the pain from the trial was so intense it overode all other pain I feel daily. Now that the pain has went away the back & foot pain are getting intense again. My trial will be over this Thursday so I am hoping for the best. Take care,

  • Since the other pain has resided, see if you can get the rep to reprogram the trial stimulator for the last part of the trial.

  • 4jkasper, I am not on SSD so I can not answer your question. I am totally feeling your pain with the out of pocket expenses. I am dealing with that myself. Good luck and I hope that you get some relief soon.

  • Good evening everyone!!

    Just thought I would let you know that my doctor called today and moved my surgery up to tomorrow. Guess this ball will be rolling a bit sooner than I thought. Wish me luck. I will let you know how it goes when I can.

    Thanks for all your kind words and encouragement,
  • Break a leg and all that rah-rah stuff. Call us when you're done. Susan
  • Tomorrow I hope to be in a little less pain. I go in at 11 to have permanent unit implanted. A little nervous tonight as I wish I knew what type they will be using. I know it will be ANS and rechargeable...I think they only have Eon and Eon Mini. Just hope I get the relief I did with trial. Wish me luck and I will post my story when I feel like being online again.
  • The best of luck and good sensations!
  • I hope that everything went well! Please post about your experience.
  • Here I am one day post op. Was a little rough yesterday...was on schedule for 1 and wasn't taken to OR until 4. Nerves got the best of me...but once the ball got rolling my nerves settled down. I was wheeled into the OR and put right to sleep. I guess they knew I was staying the night because this time I do not remember anything after they pushed the sleepy medicine. Actually they said you are going to feel a little drunk and I said that is an aweful taste and I was out. Next thing I knew I was in recovery and telling my mother good night. They took me upstairs to my room. I did have to have several pain shots....why they couldn't give it through IV I don't know. At 11 this morning doctor told me I was good to go. He told me to use ice for the swelling. He explained that I had an extra incision because he couldn't get the lead placed in the right spot so he had to go in at a different angle. I have one mid back, one on right side back, one left hip (battery), one right above butt crack, and one in low pelvis in front. All of this for chronic pelvic pain. I am not pain free yet, one incesion that hurts is the one above my butt crack. I think it is because he sit with pressure there, lay with pressure there.

    They did not turn on the stimultor last night because I was on so much pain medication and could feel everything. This morning the rep showed up...what a good sport she was with me until 11 last night and was back there at 8 this morning. One lead I couldn't feel yet again this morning..so they just have the three working. I do have significant swelling and the rep said by Monday she would be able to program more programs and get a sensation from the 4th lead.

    I came home and have been laying around most of the day...except for the million trips to the bathroom...they must of opened me up and poured a lake inside of me because I have been running like I am taking lasix. I can honestly say the pelvic pain is better and my pain is from the incesions and brusing as it is more in the muscles. I can't get out of bed by myself or roll over...but I know that is coming in due time. I am so relieved...I know it will take some time...but I feel that I am going to get great results from this tiny miracle. (Eon Mini) By the way...they did go with the smaller one as I am so small they felt the larger one would not totally disappear. Only difference is I will have to recharge one a week instead of every other week.

    I have my handy bag to go to post op visit with me. It contains my charger and handy carrying case. They will not let me charge until the staples are out...will be 10 days. I will keep you all updated.
  • Lynnlock, I hope your permanent SCS implant will give you significant pain relief. It is amazing that you are able to post here the day you were released from hospital after the implantation.
  • When the SCS is "right for the patient", the difference in pain levels the next day and the following days is incredible.


    So glad to hear that you are feeling better already. Keep up the good work and great attitude!

  • Congrats on a successful implant. Wishing you a better life. Susan.
  • I know it was quick...but I am getting a lot of relief and the surgery pain although it is significant it is less than waht I was dealing with daily. I admit changing positions is not comfortable at all. I have a burning sensation in two incession sites but after the initial movement it get better immediatly. It isn't from the stimulation it is the actual incesion site...feels like salt being poured in open wound. I have dealt with RSD in the past but had it under control and maybe this sensation is from the RSD. All I know is pain now is les than what I was dealing with daily. I go on Monday for a post op visit and for programming my unit. I still have staples at this point and noticed today that my IPG battery needs charging. I am going to call the rep tomorrow and I feel sure she is going to make me turn it down or off until I see her on Monday. That will be a bummer but I will do what I have to. I know this isn't for everyone and mine are placed in very different spots as mine is not back pain. But this is the best relief I have felt in over 3 years. I just wish everyone would be able to get the relief I have. I will continue to post as I can. Wish me continued speedy recovery...I never thought I would even feel like being on computer this quick.
  • I cried all night after the trial was taken out because the nerve pain was back in full force. I understand your comment about the pain-how did I ever deal with it? I guess it creeps up on us and we just get used to it. So glad I have my perm one now. Good luck to you.
  • What wonderful news. I'm so happy for you. Susan
  • Greetings,

    I am scheduled for a trial 10/1. I have read several posts and am cautiously optimistic about the outcome. I have had 3 back ops with the last one being spinal fusion in May. Have been in various stages of pain and thought we had the meds finally settled. Not the case and my surgeon recommended a pain mgmt dr. Went to him today and we agreed on the trial scs and not the injection pump, (yet??). I have been down the road of injections and nerve blocks with little to no success in managing the pain.

    My wife is excited about the non-drug approach to tackle this problem. These posts are an excellent way to get unbiased and honest feedback regarding operations, meds, procedures etc.

    Thank you for your comments. I will certainly add mine next week, (assuming I get the go-ahead from the ins company and therapist/shrink).

  • I'm a little perplexed here. You had a fusion surgery roughly 4 months ago and your Doctor has already thrown in the towel. SCS is considered to be a last resort treatment. I'm not telling you don't do it. I would think you would at least want to wait to see if the fusion surgery takes and improves your condition. It's possible you could have issues with the hardware. Have you got a second opinion to verify that there is nothing that can be done to fix your back?

  • Moreover, I WOULD go so far as to tell you not to do it. Four months post-op, you should still be seen by the surgeon. You should give the fusion 18months to 2 years before trying something else. Yikes! Could you have meant May of 08?
  • BotzBotz Central FloridaPosts: 223
    I waited 20 months after my fusion to decide on an SCS. I wouldn't be jumping into it at this point.
  • Hey there,

    Well I had my permanent implant on the 17th. Everything went great with the surgery but had alot of pain afterwards. I had significant pain in my lower right abdomen (so bad I was screaming and crying). Had a CT scan to make sure it wasn't my appendix, which it was not. Still not sure what it was but it eventually subsided the next day. I finally got sent home late the next day.

    Since I have been home I feel as though I have been put through the wringer. I was able to turn my SCS on but it was actually irritating a pain under my right rib so I kept it off until I could get it reprogrammed. AND I had a tummy bug with alot of nausea to deal with. Got in to see the doctor on Tuesday and he got me on some meds for nausea AND found that I am highly allergic to steri-strips!! He took them off and I am now trying to get rid of a large, very red and weepy rash. VERY ITCHY!!! I also got reprogrammed while I was at the doctors office so I can finally turn on my SCS. VERY nice to have it back. I continue to have pain under my right rib and of course incision pain but other than that, my other issues are sickness based. I believe I have now got a sinus infection. YIKES!! I am so ready to be well and able to start enjoying my new life. I can already tell it will be a success, I have that wonderful tingle back!! I hope all you have the same success I have had. I am praying for each of your recovery from pain.

  • When to consider the SCS really depends on the patient and the problem. The key is to fully understand the nature of your problem and why your physician(s) recommend a particular therapy at a particular point in time.

    I was referred to my first pain doctor at 4 months post-op from a fusion and was presented with the option of the SCS about 2 weeks later. My neurosurgeon didn't "throw in the towel" -- it was quite the opposite. My neurosurgeon had enough knowledge and experience to recognize that while my fusion was picture perfect in every conceivable way, I was developing scar tissue at an unusual rate and as a result, continued healing and time were my enemy. He knew that getting set up with a long-term pain management plan was my best option and that waiting would mean greater pain for me, not less.

    For reasons completely unrelated to medical issues or this thread, it took me quite a bit longer to actually get my SCS trial, much to my and my neurosurgeon's chagrin. However, If I had been able to go forward with my trial at 5 months post op, I absolutely would have. Some would probably think that was too quickly, but it wasn't too quickly in the context of my clinical presentation.

    Unfortunately, I know the answer to "what if I wait," though not by choice. When I look back at the pain I endured, the devastating impact it has had on my body, and the incredible amounts of medication I was taking while waiting for my trial, I know that my neurosurgeon was absolutely right when he suggested pain management so quickly after surgery. In fact, I still thank him for that - and he still apologizes for things not going as smoothly as we both had hoped.

  • Great to hear that your doc is staying on top of things for you. One issue that can happen with an SCS is chest wall stimulation. A small amount of it is easy to get used to, but larger amounts need to be programmed out. Usually it occurs when the SCS is programmed to drive the signal extremely deep and focused. next time you go in, make sure you let the doc or rep know that you have pain under your rib. One way to verify it is being caused by the SCS, is to switch the SCS off and see if the pain disappears. If it does, be certain to give that information to the doc/rep as well.

    I hope your rash eases soon. Good luck with your SCS.

  • Sorry to hear that you had so much pain. I know it is different for everyone. We had our implants on the same day. I was kept over night because I dont' wake up well after surgery and usually so sick I can't stand it. This time it wasn't that bad but I did hurt and needed iv pain meds that I couldn't get at home. I am feeling much better today...I hope this finds you feeling the same. I would talk to my doctor and ask them about the allergy to the strips. Reason I say that...I found out I was allergic to band aids and after saying I was allergic to band aids several times they finally told me it was a latex allergy. I have to make sure that I tell them because any latex will give me that broken out rash that hurts and itches at the same time. They can test this for you and let you know if it is latex or the type of glue on the tape. Take care. Happy buzzing.
  • Ron, first I want to thank you for creating these forums. They have been very helpful to me, and I think others would agree. It is a great help to be able to communicate with other spineys who "get it" with regard to sciatica, and with some people who have gone through an SCS trial and permanent implantation of leads and SCS IPG. The newbies learn from the more experienced people, and those with SCS implants compare their experiences. Everyone benefits.

    With regard to the video, I know your intentions are good. The SCS video may be helpful to people who have never heard of spinal cord stimulation. However, I am going to pick a nit. The animation shows the Touhey needle being inserted very low in the spine. It looks like the needle is being inserted between L4 and L5, whereas the most common place for insertion is a little higher so that the lead enters the epidural space between L1 and L2, because the lead electrode placement for leg pain would be between T10 and T12, to stimulate around T12 for foot pain and higher for back pain. Cervical placement for arm pain would be even higher.

    The video correctly states that the most common place to implant the SCS IPG is in the upper buttocks. I started my first thread on SCS placement, because I had seen two expert articles recommending that the SCS IPG be placed in the lateral or front abdomen instead of the buttock because of concern for strain on the lead during normal body motion. We discussed the issue on the forum, but did not reach a consensus. Many patients are following their doctors advice, and at least one person who asked for abdominal placement woke up after the operation to find his IPG in the buttock anyway. I think we learned that pain management doctors often ignore the advice of expert panels.

    Thank you again for providing this wonderful forum for people with chronic pain.
  • Ok,so maybe throwing in the towel is not the best words to use. I still think my point is valid in that you should exercise all avenues such as surgery, physical therapy, prescription drugs, and time to ensure that the nerve damage is permanent.

    My PM Doctor waited until all avenues were explored before he presented an SCS to me. According to him, if not for my stubbornness and willingness to push through all my PT the last several years, I would be in worse shape than I'm already in. Basically, my hard work has bought me extra time.

  • I was on here several years ago after I had three separate fusions following getting injured in my helicopter in Iraq back in 2004. Now after some initial relief (3+ years) from the fusions, the pain is back in force.

    I have been on the normal regime of pain meds, and have finally been approved for the SCS. I go in for the tril at the end of the month...and after reading and talking to several folks about the good and the bad I am so looking forward to it.

    In addition to getting off most of the pain meds that I've been on since 2004, I'm looking forward to some semblence of normality again.

    Thanks for all that tell about their experiences
  • Well, it's been three years since my fusion, and two years since they went in to clean up the bmp material, now, the pain has reappeared...

    I've tried the long road to correct the problem, unfortunately, not with much luck. I went to PM Dr yesterday and recommended SCS... I wasn't sure what would be the next step and lost many a nights sleep wondering what can/will be done for my back.

    I can't express how frustrated and at the same time scared I am over these back issues. Being able to browse these forums helps quite a bit, calms the nerves, reading how other successfully dealt with their situation.

    I've been browsing for posts about scs, and would appreciated any feed back from others.

    Thank you all for your time and efforts...

  • Pain Management docs are good for recommending an SCS when they feel they are up against a wall. Have you gone back and consulted with your surgeon or gotten another opinion from a different surgeon to make certain as to whether or not there's anything left that can be done surgically. If an SCS is implanted without correcting any underlying mechanical issues first, they tend to fail quite quickly.

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