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spinal cord stimulator...life after implant

I am having my scs implant on 4/7/15. I am having a T10 laminectomy with paddle placement at T8/9, for "fbs" after L4/5 microdisectomy and foraminotomy in Sept 2014. I had my trial a few weeks ago and it covered about 80% of my leg pain but only about 35-40% of my central back pain, so I say that I had about 45% total relief, and it helped enough with being able to sit that I feel its worth doing. My fear/concern is that since the removal of the trial I have had horrendus increase of my lower back pain and my right hip and butt is completely numb. I mention this to my surgeon when I saw him to schedule the implant and he said he only wants to monitor it and see it gets worse or I begin to lose function in that leg. My question for those who have had the acquits surgery, have any of you had to have further surgery regarding nerve compression/ or disc rupture after the implant was placed? Also my neurologist thinks I may have a csf leak, because while I have chronic migraines, since my last ESI I have had an increase in the severity and frequency of my headaches as well as pain going into my neck and orthostatic dizziness to the point that I can only be upright for 4-5 hrs at one time. This sucks because laying in any position for too long causes my back pain to worsen. If it is found that I do have a csf leak will this prevent me from having the scs implanted? I know they do blood patches and I have had 2 as I am prone to leaks after LPs, I've had 4 total, two needed patches and two healed with massive amouts of caffiene and bed rest. Any help would be great. Thanks


  • I have a spinal cord stimulator that was put in me on Nov 3rd 2014 I can truly say that it help the pain that runs down my right leg but the battery to the stimulator has truly change my life style in the worse way ever It hurt me so bad until I can't enjoy life I call the doctor yesterday March 19th 2015 They call the stimulator people and nothing else has been done I feel like after they make the money off of the surgery nobody care you are on your own I hurt around the clock 24 hours a day It hurt me so bad one day I thought I was having a heart attack I went to the doctor and they call the ambulance for me and sent me to the hospital because my EKG or EEG was off the chain and they kept me in the hospital I now have to go to a heart doctor and the one they are sending me to I already don't like him because of the way he treated me in the hospital I would not recommend the spinal cord stimulator to nobody !!!!!!!!!!!!!!!!!!!!! In fact I am afraid of doctors now because I have been dealing with these problems for over 10 years Had back surgery , injections in the back and all kind of drugs and I am sitting here right now hurting all over and I feel that the doctors just don't care Lord help me to hold out until my change come please !!!!!!!!!!
    S Everett
  • I am so sorry your experience has been so bad, with the battery. I'm a little less then 3 weeks away from my surgery. I kust inderwent another MRI, because I have had consistant numbness in my right upper leg and butox, which was mew since my trial in January as well as a severe increase in pain in my nack amd going into both legs. I haven't received my copy of the report yet but I have looked at the images and though I am not a radiologist it appears to be a little worse than the one I had after surgery in December, which sjowed a new small bulge both above and below my surgical site of L4-5. My surgeon suggested the SCS to try amd alliveate my pain because he didnt want to go back in because I had a 'failed' first surgery and didn't want to do such a large fusion unless he absolutely had too. I don't really want that either but if that is the end game anyway then I will agree(it will be a 3level fusion at the least), I just want to be able to atleast try to return to work. Especially since social security is giving me the run through hell with my disability application.
    So I'm guessing that unless they call and say my MRI now warrents a different approach I will be moving forward with the SCS. I just can't deal with the pain any longer. Hoefully it will help with my back pain and mot just the legs like the trial did. I'm literally going crazy because of the pain. Not just with my back but also I'm having an increase in my headaches since January as well as pain going from the base of my skull into my neck causing numbness in my hands, as well.

    Best of luck to you, I will try to keep you posted
  • SAladySSAlady Posts: 10
    edited 03/30/2015 - 2:57 PM
    Dea-Lynn, I see you are having your implant 4/7. I'm having mine 4/17 unless I get called in earlier. Let's keep posting. I'm looking forward to it because the trial helped so much and I know this is my last resort, but I'm a little afraid. I guess I might be reading the wrong threads. So, hopefully we will both have great results and a speedy recovery.

  • Mine is apparently a last resort as well. My surgeon won't do amything other then the scs because the first microdisectomy wamsnt a huge success. I believe that I reherniated not long after my surgery, but according to the report and my surgeon who I do trust, there is only scar tissue and a mild reherniation. Though there is also damage above and below my surgery site(l4-5) that wasn't there before. My surgeon didn't want to "put me through another one, and interfere with the stability of my spine". But I did finally get out of my pm amd surgeon that if this didn't work he would consider another disectomy and fusion, especially since my pain and numbness is getting worse, amd my most recent mri does show mild worsening from December.

    But first thing is first, and that means scs.

    Definately will continue to post. Hope this works for u as well. What else have u had done?
  • I'm getting scared as well, especially as time gets closer... I will continue to post
  • Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • You should join the April Surgery Buddy forum, it where everyong having procedures this month get together and chat and/or vent about our surgeries and recovery. I'm over there as well. We can also continue on this feed.
  • Having spinal stim on 4/7.....am afraid, my daughter had an attempt with one and they were unable to do it because the spine was not letting the leed in because of degeneration, arthritis etc...I want to give this a chance and have an open mind about it, I want to get rid of pain, I have periph neuropathy, and arthritis pain!
    Ruth A Russell
  • Good luck tomorrow. My permanent implant is being placed in the morning. Hopefully this works for us both. I too am just ready for some pain relief. My PM dr won't adjust my meds and I have been in uncontrolled pain since my trial in January. Just hoping this helps so I cam try to get my life back.
  • Surgery went well and I am 8hrs out of surgery. I am extremely nauseated and in a lot of pain. I am also having abdominal pain which I'm guessing is because of the position on the table. Surgeon said that if everything is well controlled I can go home tomorrow afternoon.
  • Didn't go home til Friday cause of pain. Since discharge I have still been in a lot of pain, I am having problems getting my pain meds and am umable to take them as scheduled due to lack of pills. So I am in a lot of lain amd spend most of my time in bed trying not to move, I run the stim but that spmetimes causes even More pain. I am also having a massive headache and I wish I had a reliable form of transportation cause I would go to the er for both the uncontrolled pain and headache. I hate that I can only go to certain pjarmacies and that none of them have my pain meds so I'm screwed
  • Seems to me that I was told not to turn my stim on for at least a week after surgery - maybe more. Your poor body has just gone through a big surgery! Ice off and on helped me the most. Ice, Ice, ice. I also used some extra foam cushioning (you can get the stuff at Walmarts) to prop up on either side of the surgery site. Hang in there and rest. Best wishes, Kathy

  • "2wk" (13days really) post op report:
    Staples came out, doc says incision lools good only minimal drainage. New programs for stim will be done in about a week. I was FINALLY been able to fill most of my meds, except for the 90ct of dilaudid, and zanaflex(due to moron of PA), so meanwhile I am rationing my meds like crazy.
    Bad news: I seem to have lost MS contin script, which sucks cause the won't replace it....

    Pain is calming down some kinda, though my "regular" pain seems to be worse then the surgical pain, I cant win...lol

    At ER now with killer migraine, pharmacy has to special order my meds amd apparently they were on back order
    Well that's it for now
  • Hello,

    I have been scouring the web trying to find something that could help me with my dilemma. Thankfully I found these forums.

    I have the Eon Mini rechargeable SNS surgery on June 5th. The back leads were remarkable and have helped me immensely. The only drawback that I had in the beginning was I would feel a little nauseated while recharging. And i was told that and I was "allergic" to the glue that they used because my incision sites were extremely red and slow to heal.

    About a week ago, I started having slight pain in my lower left abdomen. I have had a hernia repair there, so I thought maybe it was that, because the incision & pocket for my battery is also on my left side. Now I am an overweight female, and the pocket incision was quite painful with recovery. Walking up steps, sitting or lying in certain positions was excruciating. That was to be expected. If you picture a few tennis balls (weighted) being held together by a net, and some of the "strings" of that net are cut, the tennis balls would shift. Common sense. This pain got stronger to where I thought maybe it was menstrual cramps.......but more severe than usual.

    Each day has continued to get worse. Three days ago, I began having sharp, stabbing pains around my battery site. Touching it, I found that it had completely shifted onto it's side! I felt like Sigourney Weaver in the movie "Alien" because I could literally see the battery protruding through my skin.
    I called my rep from St. Jude and he said to call the surgeon. I also mentioned about the nauseousness when recharging and he scoffed saying, "That's a new one". So I feel he was extremely dismissive. I got in touch with my surgeon's office (Pain Management clinic) and they got me in first thing the next morning.

    I did not see my Dr., but his PA. They took x-rays and made an appointment for me to come back two days later and gave me some immediate release morphine for the pain. He did agree that it was tipped forward and twisted........but that was it. This was yesterday. I honestly have felt
    like going to the ER at least 4-5x each day. But I refrain because I doubt there is anything they can do!!

    The pain is now escalated to my diaphragm. I discovered this when yelling at my kids last night! I have been sitting for days with ice on my site and in a binder around my torso. It helps somewhat, but also makes the battery feel like it's pushing up against my stomach Confused I have pain around the back of my left rib cage to just below my sternum......and this is when sitting still. Going upstairs and moving my bowels is very uncomfortable and I just keep popping the pills. Which ironically, is the actual reason why I went for this surgery. .... to get OFF of all of these pain meds!

    I've read about battery migration and leakage, but can't find where it lists the symptoms. Is this something that it could be? If so, how do they fix it? And has anybody else experienced something like this or up to offering any advice???
    Thanks in advance & wishing you all well and good luck!
  • grammaof9ggrammaof9 Posts: 263
    edited 07/19/2015 - 8:00 PM
    Please update me as I may be considering this as an option.
  • Its been three months since my surgery, and while I have 'better' days I never have pain free ones. Also, since my surgery I have had an emmense increase in my migraines. I saw my surgeon on the 13th and was told that the scs may never relieve my back pain which is why I had the surgery to begin with. My right leg gave out memorial day weekend and I fell thankfully acccirding to XRs I had the leads didn't move. I'm going through 6wks of PT before he will consider a CT myelogram so 3wks to go with that.
  • ljjjjtlljjjjt Cincinnati, OhioPosts: 1
    I just got my scs put in 6/6/16. I noticed my feet are so swollen and the area around the batter pack ect stings severely!!!!!! on and off all day. Are both of these normal?
  • truepersonttrueperson Cary, NC Posts: 3
                                                          The 1st Surgery On Tuesday May 17, 2016
                                                        ( 1st Part of Spinal Cord Stimulatore Implant )

    Wednesday, November 27, 2013, I was driving in the morning on  I - 40 East towards to my work , NC. One car hit me from back. I got blacked out right a way. When I woke up, I was told by Highway Petrol Officer that three cars hit me from back.
    I got blacked out so many time from that day and end up in Emergency Room. Due to " CAR ACCIDENT " NO DOCTORS WANT TO HELP ME !!!!!
    My pain got worst and worst. Finally I fond the doctor who can help me with my pain all over my body and specially back off my head in beginning of 2015 ( and this thanks goes to Urgent Care in Cary, NC ).
    I was getting STEROID INJECTIONS very 2 weeks on my lower back  for long time.  But my pain was getting worst and worst. Finally decided by NEUROSURGEON to go for Spinal Cord Simulator Implant.
    May  17th 2016 I was admitted in hospital  for the 1st processor. From recovery room I was moved to Neurosurgical Patients Area ( Forgive me but I don't  what the correct word for this ).
    Head of the Nurse of this department didn't want to put my bed in that area !!!!!!!!!
    Just came from recovery room after SCS Surgery couldn't even move from one side to the other side in my bed.
    I need to go bathroom but the main nurse refuse to help me and not only that every time when she came to my room with some one else or by her self she was poking on my bandges to make sure I know that she is BOSS up here. When I complait about that to nurse, she start to hurt me more and more. Next day the other nurse came and told me that she suppose to do sponge bath but she not going to do that because she can do other stuff than giving sponge bath. Next day of my SCS surgery 05/18/2016 , I was in lots off pain had 99.9 feaver  but the nurse forresed me to leave the hospital . Me and my kids bageed her to let me get better and I will leave the hospital. One of the PA Doctor gave me reason why is good for me to leave now, He said that if I stay in hospital, than I have to listen to them and they will give me one or two pills or  maybe don't  gave me anything. If I go home than I can take as many as pills I can take !!!!!! I was crying to let me feel littel bit ok and I will leave. But
    I had to leave by forse. I suppes to get walker but nurse didn't them know that I am leaveing. The next day they dilivered at my home. Start to take PRESCRIBED MEDICATION BY MY SURGEON. In two days I start to feel ok.                      
                                                   2nd Part of SCS Implant on Tuesday, May 24th, 2016

    I went back to hospital for my 2nd part of SCS surgery. Everything was ok. My surgeon and  technician from   

    I got decharge from hospital with same medications that I was prescribed on 1st part of this surgery. took same dose sue to lots of pain so I can sleep. Only the diferance was between these two surgery was that 1st one they cut me off to preper to put matchen and wiered inside my body.

    I woke up in the morning with very strong eachy, big red rashes all over my body. Me and my family tried to find out what's going with my body.

    We tried to reach surgeon or someone from his office/department but we did not got any respons until 05/27/2016. I was told  not to take 2 medicines out off 6. I did but did not helped me at all with reaction I had all over my body including my eyes and inside of my mouth.

    We was trying to call hospital, surgeon, surgeon's PA, his staff  but no resons after 05/27/2016. To get their atention, Called the appointment number to cancel the appointment that I had for to remove my sutures ( Appointment was made right I woke up in recovery room and date was 06/06/2016 at 11:00 AM ) and told them why, what was the reson to cancel but still we didn't got any respons untill 06/06/2016 at 12:30:31 PM saying that they just find out that I cancel the appointment. Surgeon's PA strat to lie about they tried to called me so many times but I didn't resopend to their phone calls !!!!!!!!!
    My family,  technician from Boston Scientific Co. (  we also tried to reach him on but he was out with his family to celebrate his birthday and forgot to change his voicemail or somthing  so he called me on Tuesday , May, 31, 2016 and he said that he will also try to reach them but we didn't heard anything from him untill 06/06/2016 maybe around 2 pm to 3pm. I am not sure exact time because he texted to my son not me ), also the doctor from Urgent Care.

    I still have my sutures on my body. Now they are trying to put everything on me. I am afraid to go back there to remove my sutures. I asked for surgeon, because maybe he even have no idia what is going on after my surgeries.

    The reson  reaction : Me, my family or doctors from Urgent Care still don't know why I am haveing these hugh reaction all over my body.  From 05/28/2016 I am off from all medications including ANTIBIOTICS and still they don't care.

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