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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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  • allaroundanne
    allaroundanne DJ1976

    Posted

    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!

    • DJ1976
      DJ1976 allaroundanne

      Posted

      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

  • jayne78019
    jayne78019 DJ1976

    Posted

    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

    • DJ1976
      DJ1976 jayne78019

      Posted

      Hi Jayne.  I had my stimulator put I on 3/2/17.  I had absolutely no relief from the getgo.  I had numerous adjustments to the stimulator.  They were adjusting it begrudgingly.  They only did so cause I complained so much.  On 11/2/17.  Since that time have been getting pain management treatments.  There were steroid injections.  Tomorrow I will see my 3rd pain management Dioctor.  I hope it works this time as I am out of options.  The pain today is unbearable.  It affects my walking to the point of wanting to scream.  I hope you make the right choice for you.  I do not regret having it removed.  I wish you pain free days ahead.

      Dee

  • samantha08562
    samantha08562 DJ1976

    Posted

    I am doing the trial stim now and i have the leads, it seems to be working really well. I have read some other posts about people who have had the paddle put in after the trial. i know when i was discussing with my PM doc that i didnt like the paddle and he said the leads do work better and they have more control. I will say so far i have a really good rep who i had to call on a sunday morning, and not really expecting an answer until monday but she did call me back within 2 hours. So after reading i will say i am really lucky with the team i have handling my case, i will say i did 2 months of research and had a page full of questions, which i am doing again, my triai ends Tuesday. I almost think with all the questions and facts i had already put together, i think the rep and the PM doc knew i wasnt going to just let them cut me open. Like you i have had many surgeries, and am tied of being cut. I hope you find a good PM clinic who will give you the care and attention your case deserves.
    • DJ1976
      DJ1976 samantha08562

      Posted

      I am very happy that it is working out for you.  During my trial, I had the leads and they worked quite well. Then the paddle was put in.  I Was told the paddle had many more variables in programming.  Unfortunately for me not.  Having good after care is paramount in recovery.   Good techs can make all the difference.  When you find a good one who listens to you means a whole lot. I had a great one, but she quit then it was downhill from there.  So one chapter ends another one begins.  I hope you do fantastic with your stimulator controlling your pain.

       

  • ellebe
    ellebe DJ1976

    Posted

    Please help me. I ask for everyone’s advice and suggestions: I have no insurance to receive treatment, scans, X-ray, etc. does anyone here have experience getting help through St Jude to remove the stimulator or simply have it fixed? Mine was implanted June 2017 and now my ribs are shocked and burning. My arms have started to do something weird and quite painful like numbness and tingles and spasms... much like what we all experience in our legs from nerve damage. I’ve alrea had it reprogrammed 4x. My pain meds steadily increase as that’s all they can do for me at this time. I had to stop working last Wednesday and e are going to apply for SDD but that takes forever. I don’t know what to do. I just don’t know what else to do.
    • samantha08562
      samantha08562 ellebe

      Posted

      i have a suggestion, have you thought about applying for medicaid? If you have gone on state disability the income you receive will be low enough to get the medical, Or just apply in general, they will cover the medical expenses, if you have gone to the ER they also have the information on your states medicaid program, i know its a last resort but it will help with the medical expenses until SSD starts, thats how i had to do it until my SSD started then make sure you fill out the right paper work to keep it while having SSD because medicare only covers 80% of the medical the rest is on you and also medicare doesnt cover scripts either. now you can look into the supplemental that medicare offers but they are costly
  • marsha91861
    marsha91861 DJ1976

    Posted

    I am scheduled for the removal of my Boston Scientific Neuro Stim this Thursday. It was implanted a little over a year ago and worked to relieve my back pain. Soon after implant I started to get swelling and tenderness at the lead site in my upper back, which had only increased ?? This swelling is made worse by moving around and doing any activity.  My implant surgery took me a month to recover from. My stimulation’s been off for over a month now and I still have pain and swelling. I’m greatful to have it scheduled to be removed but also very nervous. Any ideas on if the removal will be the same recovery experience or different? Also has anyone else experienced swelling and extremely tender area near the leads? Thank you.

  • frank1967
    frank1967 DJ1976

    Posted

    Just found this thread and site today. I leave for the hospital in about an hour for removal of my Medtronic SCS. Its been an 18 month journey on getting to this point. I had mine implanted April 8th 2014. Had 2 years of decent relief. I cut pain meds in half with the stim. Then I developed a large knotty area and swelling all around the knotty area a year and a half ago. Anytime I would do any type of work or activity shortly after I would pay for it with awful pain. I had to go back up to original dose of pain meds and it didn't touch the pain. I had countless epidural. One which my doc missed and I had headaches, migraine, double vision for a week. He had to do a blood patch. He has no sympathy at all for me. He wanted me to try therapy. Each place I tried felt how large the area was and the large knot and didn't want to risk paralysis. He then wanted me to see another pain doc. I did this a month ago. I figured he would agree with my doc and say leave it in. To my surprise after he I elected my back, he said you need this out and soon. So here I am about to go for removal. I want my life back. I can't play on the floor with my 10 month old grandson. I don't remember the last time I didn't have extreme pain in the site where my leads are located. Hopefully I can keep others updated on my progress. I wish in hindsight either my doctor or Medtronic would if let me know about side affects. Also Medtronic will not talk to me or help me in any way now. All they say us contact your doctor. That's unacceptable in my opinion.

  • lorna35019
    lorna35019 DJ1976

    Posted

    Hi Dee. 

    June 2015 I had the St Jude Spinal and Cervical Stimulator fitted. Last year it started to move after i had a fall and kept getting worse was denied a fat transferal operation to push battery. Back into skin. Since then movement and electric shocks even though its off. I am now having it totally removed on 10th May 2018. Could i ask what is the recovery period and any pointers to help me please would be appreciated.

    Lorna xx 

    • DJ1976
      DJ1976 lorna35019

      Posted

      Hi there.  My recovery time was about between 2-2 1/2 wks for the surgical pain to leave.  But don’t push it.  We all heal differently.  Good luck.

      Dee

  • linda1718
    linda1718 DJ1976

    Posted

    I’ve been offered a Nevro High Frequency stimulator but I’m finding it very difficult to decide if I want to go ahead or not. So many bad reports on here about these stimulators! Aghhhhh!
    • allaroundanne
      allaroundanne linda1718

      Posted

      Why don't you at least do the trial and see if it helps?  Keep in mind there is a whole world of people out there with successful SCS who aren't on this board because they have no complaints. Happy people don't take to message forums to whine about their happiness LOL.

    • linda1718
      linda1718 allaroundanne

      Posted

      Thanks Anne, it’s a few weeks away yet as I’m off on holiday for 2 weeks then I do this Lifstyle for Chronic pain for 4 weeks then I will know but thanks for your input.

      Linda x

    • samantha08562
      samantha08562 linda1718

      Posted

      i did the simulator trial and it was amazing on the relief i got, so much so that i had the perm one installed last monday, my stitches come out this monday, and they program the unit then. i will agree that there are many more in this group where it hasnt worked for them, so much so i was scared to even have a trial done. I'm glad i did, and really wish there was more on here who it did work for, but as anne said more people who it didnt work for will be on the message groups to find other treatments that may work, the ones who it did work for are now out enjoying life with less pain. The biggest thing i can add it that we are all different, pain threshold, medical issues and personalities, give the trial a fair try, you will only lose a few days my trial was 5 days and you will have an answer. I hope it goes as well for you as it did for me, i'm not planning things i have wanted to do but couldnt because of pain. Good luck to you

    • DJ1976
      DJ1976 linda1718

      Posted

      Linda not all,of us who havwva stim put in have lousy results.  Although there are many of us we find solace here.  But so many are having good positive results.  I would say do the trial to see for yourself if it benefits you.  Nothing ventured nothing gained.  Keep us posted on your progress.

      Dee

    • linda1718
      linda1718 samantha08562

      Posted

      Hi Samantha,

      Really great to read a success story! I hope you continue to be pain free. You just might have convinced me to give the trial a go, will keep you up to date once I have completed this Lifestyle for Chronic Pain.

      Linda x

    • linda1718
      linda1718 DJ1976

      Posted

      Hi Dee,

      Thanks for your input. After reading Samantha’s post I think I will give the trial a go. Will keep you updated.

      Linda x

    • samantha08562
      samantha08562 linda1718

      Posted

      i really wish people would also post the success stories, but i did learn a few things also the first 2 days of the trial hurt the most, dont be afraid to adjust the stim settings from pulse to non pulse, also some of your movements will be restricted, like bending and lifting your arms over your head, but please dont be afraid to move, i walked as much as i could and did activities that didnt require the restricted movements. I wanted to give the trial the amount of attention it deserved esp with thinking i might get the perm one. I thought of it as test driving a new car i might buy. lol mostly because once you get it it is yours. I learned that from this message group, also they will give you a booklet to keep track of your movement and how you feel pain and emotionally. I know it doesnt work for everyone but i also think if your going to let them implant something, you need to have a good idea of what your getting into. The removal of the trial was very easy actually done in the doctors office, it didnt hurt. I would describe it as them pulling a piece of spaghetti. i know it sounds weird but accurate.
    • frank1967
      frank1967 samantha08562

      Posted

      Hi. I did have success with mine for close to 2 years. So I was a success story. But for an unknown reason I developed large amounts of scar tissue around the leads area. The pain was just unbearable. I have had mine out a little over a month now. I still have some scar tissue issues in this area of my back, as well as pain in this area. I never had pain in this area before. So by putting the atom in now I have permanent pain in this area. As well as the pain in my lower back where the stimulator was implanted to help with. I still think Medtronic is liable for this new pain.
    • samantha08562
      samantha08562 frank1967

      Posted

      Hi Frank, i will say i think the stim unit itself has alot to do with it. My trial was with a St Judes unit and that is what i had implanted. i have heard of the body making too much scar tissue and that can be one of the complications i was told about. I know it is also unique to each person, so im sorry for you having developed it. From what i have read its a way the body starts to reject the leads. I have noticed that medtronic seems to have more complains than st judes, but i would also think they would be relativity the same in most respects. did your doctor and the rep cover all the complications with you? i know with mine i and the rep had an entire packet of stuff we had to review before they would even put my trial in.
    • linda1718
      linda1718 samantha08562

      Posted

      The one I’m being offered is Nevro High Frequency, have you heard anything abut them?

      Linda x

    • samantha08562
      samantha08562 linda1718

      Posted

      yes, but they only implant the leads and some of the wires, the battery pack is secured on the outside of the body. The whole thing is covered up so you cant look at it. It was a little creepy knowing that the thing was half in and half out of my back. The biggest problem i had was not being able to shower during the trial, you can wash up with soap and a wash cloth but no water over the cover they use. Like i said removal was easier than i had thought, it kinda freaked me out knowing they just pull it right out. I havent heard anything about the nervo, but im sure if you search the message boards there will be a thread on it.
    • allaroundanne
      allaroundanne linda1718

      Posted

      I have a Nevro for my neck and a St. Jude for my lower back and thigh cramping.  I actually prefer the St. Jude.  The Nevro isn't very programmable and it has no tingle mode to tell you what areas it is covering.  In fact the only way to tell that it is on if you are still having pain is to shut the thing off and see if you get back all your pain LOL.  My trial with the Nevro went far better than the permanent has been.  In the trial it covered not just my neck pain but hit the neuropathic pain in my arms. The permanent implant has only worked in the neck and it took some work on their part to get that.  It is an odd thing now, my neck muscles get all tight and irritated, but I can't feel them unless I touch them or someone goes to massage them. So, I have minimal pain in my neck and through PT I got back my range of motion and my strength and stamina to hold my head up again.  As for the St. Jude my only complaints is the non-rechargeable battery life is ridiculously low-mine lasted 8 months, instead of the 5-7 years promised.  I had to get it replaced with a rechargeable.  Other than that it has been great.  I love how much more programmability it has and I love that they can put it into tingle so you feel where you will be getting coverage.  I now have CRPS in my ankle and they directed coverage down there to help out, along with continuing my low back coverage.  I also have different programs with different lengths of time of stimulation.  I like having choice, if I have a bad day I can toggle around to different programs to see what I need.  Nevro really only has 2 programs and all you can do is go up and down on those two.  The box they give you says 3 programs but the third is blank. Oh, and the Nevro has no non-rechargeable, you will have to recharge every couple of days. It was kind of nice not recharging, but as I said, that only lasted 8 months LOL....

    • samantha08562
      samantha08562 allaroundanne

      Posted

      I am a little concerned about battery life of the st judes, but the programming was the reason i chose it, your right about the options i just had mine programmed today along with getting the bandages removed. Another good thing is my st judes rep will meet me at my meds appt to do programming if i need it so i can get it adjusted every month until its perfect. I have heard a lot of horror stories on the rechargeable batteries so you have to keep us posted on how it works
    • linda1718
      linda1718 samantha08562

      Posted

      Hi Samantha,

      Very many thanks for the information, much appreciated 👍

      I think I would be freaked out too when they pull it out! AND definitely don’t like the idea of it being half in and half out but I suppose that is the only way they can do the trial.

      Thanks again

      Linda x

    • linda1718
      linda1718 allaroundanne

      Posted

      Wow you have 2! 

      Im sorry you haven’t had much luck with the Nevro, on their web page they make a big thing about no tingle or buzzing but I suppose they have to do that.

      You have been very unlucky with batteries, quite a difference between 8 months and 5-7 years! 

      The St Jude sounds great but the Consultant who will be dealing with this only told me about the Nevro so I don’t think I will be given a choice, thats the good old NHS, and that’s if I decide to go ahead with the trial! 

      Great to read you can hold your head up again, good on you 👍

      Many thanks for all the information I really appreciate that you have taken the time to let me know what you think.

      Linda x

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