Removal of Spinal Cord Stimulator

Bones, joints and muscles
1

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

2

Hi DJ,

Im sorry to hear about your problems with a Simulator. 

My Consultant has mentioned a Simulator at our last appointment but I have read so many horror stories on here about them that I think I will give them a miss

You mentioned different injections that you hadn’t tried before, could you please tell me what these are.

Good luck with whatever route you decide to go down.

Linda

3

Dee, nice summary!  I received the Nevro device.  The trial was great but the permanent placement just has not worked.  I had one series of reprogramming then the company basically ditched me.  I actually turned it off for several months and there was no difference.  I then emphasized to my doctor that I was not getting support and had the Nevro team meet me at my doctor’s office.  They reprogrammed again.  I have been through most of the new programs now and still no difference.  I now know more people who have had theirs removed than leaving them in.  Fortunately my pain management doctor is amazing.  Thank God for that but living like this really isn’t living at all.

4

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.  

5

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.

6

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

7

Linda I have had epidural and fact block injections.  Next will try oblation, burning the nerves.  Not going to be pleasant from what pm told me.  I do not handle pain well  so I go into it with great trepidation.  If it helps, then it will be worth it.  If not, I guess back to drawing board for other options.

Good luck to you on our journey to reduce your pain.

Dee

8

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. 

9

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?

10

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?

11

It's Lynn, not Dianne, LOL, but I know I have been AWOL for awhile.  I am glad you let them have it about your pitiful aftercare. I have noticed my Abbot bunch is adding a third because the two of them were spread thin for the territory, so Abbot is aware of the problem.  Now, let's see what they do about batteries not lasting even one year!

12

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

13

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

14

hahaha funny.  Was worried about you.  Yes so it is out.  Have never heard back from the illusive Abbott since my escalating to upper management.  Not thru with them yet.  Waiting until I feel better and compose my thoughts cogently so they don't think I'm a nut case.  I still have the controller and if they want it, they will have to come to my home to get it or at least they should let me keep it for all the hell they put me thru.  Fat chance.  it will sit in a cabinet awaiting them sending someone to get it.  now the tech knew when and where the implant would be removed.  Not a word from him since that text.  Staples out next Thurs.  

have not been feeling well since the procedure.  Went on some heave drugs and I decided this morning, I am thru with them.  Definitely do not like the way they take hold of your life. So not for me.  So will be trying to manage pain with Tylenol until i can back to PM.  Think we will try an injection, that he prepared me was going to be painful, just what I need more pain, LOL that when injected will shoot down the leg.  I thought that was a facet but not.  So I may put that off till I can't stand it again.  

Right now need the surgical pain to leave.  We had some complications in OR.  Only took 15 mins. to remove the paddle and to do another lamenectomy. but evidently had a massive nosebleed.  First quest in recovery, "how often do you have thee."  Stunned and said, "Not since I was 6 and had it cauterized.  Plus upon leaving the bathroom, I looked in mirror as washed hands, Oh yeah two black eyes.  Can't wait to see the OR report on this one.  LOL  Home and having good days and bad ones for sure.  Emotional roller coaster as Next Wed. the 10 will be 9 years since we lost our oldest daughter so my brain and emotions have been all over the map.  Sent hubby shopping today, as much as I have cabin fever, I might lose it in the store for whatever reason..  Would rather be basket case at home.

I do hope you are fairing much better.  Also for anyone else reading this, I do hope and pray for all you every night for significant pain relief.  Let me wish you a Happy Thanksgiving.

Be well and don't be a stranger.  Find me on FB Lynn.  Thanks my friend.

Dee

15

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

16

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

 

17

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

 

18

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...

19

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

20

Hi Dee, I had a Nevro stimulator put in my back a little over a year ago.  I didn't know this site even exsisted and I'm so happy I found it.  I read your share and I was wondering when you had the stimulator taken out was it painful and did you have to stay in the hospital.  I too have had several back surgeries and had the shots but nothing helped.  The stimulator still hurts and it itches like crazy.  I hope your feeling better each day, your in my prayers.

Jayne