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Removal of Spinal Cord Stimulator

Posted , 23 users are following.

DJ1976
DJ1976

In March of this year, after 3 back surgeries, countless physical therapy sessions and many back injections, I opted to try a stimulator.  The trial was with leads from Abbott formally St Jude.  After 1 week and a total reprogramming, I had a major reduction in my pain.  I was so excited.  So we went for permancy.

 My nightmare began,  implanted was the infamous paddle not the leads as in the trial.  Did not know could have insisted on the leads.  Many surgeon’s and pain management prefer the paddle, as they say it has many more variables for programming, maximizing coversgeya d pain mgmt.  NOT SO IN MY CASE.

I had. Programmer not really wanting to spend the time to get it right, few and far sessions that I finally complained to surgeon and the Company.  Got a new programmer.  He tried hard to find the right program and setting, but to no avail.  So for 8 mos. to the day, I made the decision to have it removed.

It was not an easy decision.  It never worked from the getgo.  So on 11/2 of this year I had it totally remivedy.  My surgeon said I did everything asked if me by her and the tech but nothing worked,  As she was preparing to meet me in the OR, she was in total agreement with my decision.  She knew of my problems with the original tech, his lack of compassion, concern and a rush to program me and leave.

It is out and now dealing with surgical pain again.  I have no regrets with my decision.  I will pursue, with a new PM doctor different injections that were not tried before.  So if anyone is thinking like me, I say go for it.

For those whom it works, I say to you Thank God and I couldn’t be happier for you.

My journey with the Stimulator is complete and a new journey to find pain management begins.  I am done with surgeries.  No more.  I think 5 is more than sufficient.

Good luck to all who are still on their Stimulator journey.

Dee

5 likes, 95 replies

95 Replies

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  • kay09025
    kay09025 DJ1976

    Posted

    I can chimebinbonbthe injections..they are generally cortizone injections.  I get them in L4, L5, S1, and the Sacroiliac Joint.  Also I have had radio frequency ablations.  I have tried them three times and all three times I ended up worse.  The injections are greatbif part of your pain issue is swelling because that is what the steroid does; it resuces inflammation.  
  • allaroundanne
    allaroundanne DJ1976

    Posted

    Oh boy, that must have been one heck of a decision to make.  But, I can't see why you would keep a hunk of junk in your body just waiting for it to cause some kind of rejection crisis or god knows what LOL.  My damn Abbott stimulator has been giving me the "your battery is running out, please replace soon" since May.  The Abbott people have done everything in their power to convince me this is a software glitch, and not true...in the meantime they keep setting me down as "recent studies have shown you can set it 300% lower in burst mode than we thought", which gets rid of the low battery message because you are using less power.  But, my pain came rip roaring back within a day.  They have been playing around so much with it, I have never gotten back my 100% pain relief.  I finally went through all they could do for my neck and we came to trying a stimulator, there was no way in hell I was going with Abbott.  I just did Nevro a couple of weeks ago and it went really well, I'd say 80% pain relief.  I am getting the permanent Dec 8. I am going to replace the Abbot battery then too, the thing has been randomly turning itself off, setting itself down, it has stopped working for my nightly muscle cramps.  It is clear to me I don't have a software glitch.  I have a battery that lasted 9 months.  Since the Nevro is rechargeable and having electrodes in my neck makes me unable to get an MRI, I am going to get the rechargeable Abbot battery this time since their nonrechargeable doesn't last even a year!  But, for anyone looking at the stories here trying to decide about a stimulator, mine works so well for me, I am getting a second for my neck!  I really do vote yes and feel so sorry for Dee's experience.  I am sure, Dee, you are just glad it is out, and you are back to where you were with you PM doc engaged with you, with ideas of things to do.  Perhaps you may end up with one of those pumps that puts small amounts of drugs into your epidural space.  That is my next move if these stimulators fail.

    • DJ1976
      DJ1976 allaroundanne

      Posted

      Thnx Dianne for your support.  I will never ever have anything else implanted in my body.  My experience has not been a pleasant one from the beginning.  From a surgical standpoint, it was a great success.  From an implant status, it was a nightmare.  For those who want to pursue more for their pain relief, I wish only success and as pain free as you can get to have quality of life.

      I tried the NEVRO first with no relief at all.  I told the surgeon as well as the Abbott Corp., that I would not recommend their product until they put patient after care first.  Good luck Dianne with your up coming implant.  Please keep me posted on your outcome.  Will be thinking of you.

      Dee

    • kay09025
      kay09025 allaroundanne

      Posted

      Wow!  I have not heard of an SCS device giving that kind of pain relief percentage!  You seriously had 100% pain relief?  No pain meds?
    • allaroundanne
      allaroundanne kay09025

      Posted

      Yes, 100%. I went three months without even playing with the setting. Then I had a bad morning and of course the iPhone had to be charged to even use it to set my stimulator up one and all of a sudden I got the your battery is dying, call your doc to replace it.  This was literally 4 months after insertion.  Once I let the reps in on this problem, my pain relief has never been 100% again, grrrrrr.

      Lynn

    • kay09025
      kay09025 allaroundanne

      Posted

      I am happy for you (that you had such relief).  I do hope you can get there again!
    • DJ1976
      DJ1976 allaroundanne

      Posted

      Sorry Lynne between you and Dianne, I need to de fog my brain as to who is who.  So if I call you Dianne and her Lynne just chalk it up to old age and crappy brain retention.

      Love ya both....Dee

       

  • kay09025
    kay09025 DJ1976

    Posted

    Whi DJ1976.  I am so sorry you are going through this.  I am curious if you have tried radio frequency ablation.  It did not work for me but you might want to look into it. 
    • DJ1976
      DJ1976 kay09025

      Posted

      I think that is next from my pain mgmt Dr.  But not ready yet.  Want to give my body some to heal before I jump into anything right now that has a pain component in the beginning.

      Dee

       

    • kay09025
      kay09025 DJ1976

      Posted

      That is always the challenge; making sure two things are not in effect at the same time!   Even changing setting in rhe SCS really takes a few days to give a clear indication of what the effect was.  Then if you change uour activity or spacing of meds you may get a false sense of exactly what helped or caused the pajn to get worse!  Take care...
    • DJ1976
      DJ1976 kay09025

      Posted

      I have always since the Stim was put in given each new change in setting 1 full week.  I have never had any pain injections during the first 6 mos.  Only recently took a pain inection as I knew it was coming out.  I have been on no pain meds during the entire time, 8 mos of the stim being in my back.  Thanks for the thoughtful words.  Take Care....Dee
  • Annab1983
    Annab1983 DJ1976

    Posted

    I completely understand what your talking about. I had a Boston Scientific paddle placed in March of this year and I am still in worse pain than I started with before surgery. I am not able to use the scs because it puts my upper back into severe spasm within 2 minutes. Some programs its almost immediate. The placed mine at T-3-4 because I have all 3 spin al sections with problems. I really want this thing out and waiting to see my PM in 9 days and will discuss this option with him. My thoracic cord is rotated and the nerves are obviously not where they should be. I had an epidural injection at t1-2 and during the procedure he warned me that I may feel it pinching in my shoulderblades. I had no pinching in that are but I had extreme chest pain.

    I have tried so hard to be a good patient and do everything they asked or recommended. I tried to be hopeful and keep a positive attitude but its getting harder and harder to do.

    My neurosurgeon told me that the scs was the 1st step to try and that if it wasn't successful that I still had the option for spinal fusions. He made the comment that he wouldn't know where to stop if he did the fusion. Its just in pretty rough shape already at 34.

    I'm exhausted from being in constant pain and trying to hide it from everyone all day long.

    Is the explant as bad as the implant was? Did you receive relief from the pain it had been causing once it was out?

    • DJ1976
      DJ1976 Annab1983

      Posted

      Annab1983  I still have the same pain as before, but until all the staples are out and I wait another month for true healing, I won't know if removal possibly lessened the prior pain.  If it does, and I can manage it with whatever my new PM guy can come up with, I will be happy.

      As I am much older than you, I have learned a very valuable lessen, listen to your body.  When it hurts stop.  Don't be the martyr and push to get stuff done.  I have had to close my eyes to stuff in the house.  I feel, now, it will be there when I feel better.  I have an awesome hubby, who has severe arthritis himself has picked up the slack.  Two great grandsons and two daughters who help when they can.  But I am the type of person, hard to ask for help so I muddle through.  Take time and if you have good relations with your PM Dr., that's where to start.  Wish you luck and keep me posted.  Dee

    • ellebe
      ellebe Annab1983

      Posted

      Hi! Please tell me more about your pain in upper back. Near rib cage area? Close to where our leads were placed? I have massive burning, shocking and feels like my ribs are being crushed. Also my arms are starting to act weird and painful. Spasms everywhere. It feels better when I turn off the unit completely but then I have to bare the leg pain. 

      I want it removed but have no health coverage now. I am so defeated and lost and tired. How are you now without it?💙??🙏🏼

    • Annab1983
      Annab1983 ellebe

      Posted

      Hi Ellebe,

      I'm so sorry that I didn't see this until just now. I had my stimulator removed in Jan. I ended teh experience on more pain meds than I started with. It was really really rough. I just saw Neuro for my next step (pain pump) and he said that I was a shot in the dark with the stimulator because of the twisting of my spinal cord they didn't know exactly where to place it. So they made an educated guess and then treated me as though what I was feeling that whole time was normal. It wasn't! 

      If you know something isn't right, say something. There are often some kinds of community care clinics that may be able to help since you don't have insurance. 

      Part of my back feels better but it did do nerve damage. So I still have burning pain and its still in a near constant spasm. I lived at about a 9 with the stim in place. Now its about a 7-8 with meds. So yes, it helped. 

      I am so sorry that your having so much pain. That's not a great way to live. My pain was in my upper back. Between my shoulder blades and under them. So mid and upper I guess. The best most vivid description I found to show what I felt is a cattle prod. Extreme jolts that instantaneously locked up the muscles and made me jump out of bed at time. There were other times that I felt like I was being stung by a jellyfish. There was this constant electrical buzz through the same area. Its like it you stuck your hand in a light bulb socket but were never able to take it out. 

      Like I said before, its a little better now. I do hope that the pain pump will help to alleviate some of the residual pain that I'm still  having. 

      Best advice? Take it one day at a time. Breathe, Lean on those closest to you. Try to find out what community services are available through local hospitals and charities if you have to. You are your own best advocate. You are not alone! I know where your coming from and I can relate to what your feeling.  Just don't give up. Anything else I can do, just let me know!

    • frank1967
      frank1967 Annab1983

      Posted

      Hello I had my stimulator in for close to 4 years. First 20 to 22 months were great. Went down to half pain med dosage. Then like a bolt I developed a large knot right in the middle of my back. I went to the pain mgmt to let them know. The main doc implanted it in 2014. I was seeing the PA. She felt it and noted it and gave me a shot there in the office and doubled my meds strength. I lived in hell for 2 years. God awful pain. Even if I laid around all day it still hurt bad. Of course they kept wanting to give me epidural and in office injections. Late last year my doc missed with the epidural. I hope this never happens to anyone in here. For 4 days I threw up 8 to 10 times everyday. Blinding headaches constantly. After he gave me a blood patch, I told him I want it out. All I do is sit in agony and misery. He put me off. He said try therapy and massage. Its funny he wrote out a script for therapy at the hospital he is employed in. They felt my back, consulted with a few other therapists and they all said we aren't touching this. We could paralyze you. Same for 2 massage therapists. I tell him this and he said go to another pain doc and see what they tell you. After me calling him after one month and no appt they got me in. I was thinking this is a big waste of time as my doc chose him

      I was amazed when he felt the large knotty area where the leads meet and said you should get this out. NOW. So finally my doc took it out. He now treats me like a child. I need to record my appts. He now has me down from taking 120 15mg pain meds to 90 7.5mg. I do want to work my way down but I was hoping gradually. I told him there was a reason you put the stim in. I have all these issues with my back. I don't know if Medtronic looks down on him or why he is making me feel so bad. One last thing the company Medtronic could of cared less. No calls to ask what was going on. I emailed them and called them but no one called me back. Just an automated email. This blew me away. I would think they would want info for future references. My pain now is 60% better. I can play with my grandson. Do yard work and other activities now. There is still pain but I have a wonderful compound rub with 7% Lidocaine and 7% Tetracaine. If your is bothering you, I would get it out. I just hope it doesn't take you the 2+ years it took me.

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