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Spinal Cord Damage

Posted , 7 users are following.

foxy32222
foxy32222

How many people had their SCS removed? And how do you feel after having it removed.  I've heard some people have had it changed.

0 likes, 22 replies

22 Replies

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  • Brashbuzz
    Brashbuzz foxy32222

    Posted

    I had to have a lead replaced due to a fracture in the lead 18 months ago. When they replaced it they inserted 2 leads instead of the one (so there would be a backup lead should there be an issue with one this time). They also cut another lead that wasn’t viable in another area, and replaced the battery which had migrated and flipped over (3rd time this had happened). Because they were doing the lead & battery at the same time they changed the entire system to a different system. 

    I have had nothing but problems since unfortunately. One lead has significantly migrated (pretty much immediately) and I did nothing at all after surgery as I am couch & bed bound anyway. It is protruding significantly sideways out of my spine at almost a 90 degree angle. My back (which wasn’t the reason for the SCS is in excruciating pain when I try to get up & down, like razor wire ripping out of my spine. I feel like my spine is dislocated. It has been a total nightmare for me. They want to redo it but I’m just not prepared to risk it getting worse again. I honestly think at this point I’m done with Spinal Cord Stimulators and the surgeries that come with them. 

    • foxy32222
      foxy32222 Brashbuzz

      Posted

      Good morning Brashbuzz,

      I am so sorry to hear about your experience with this SCS.  I only wished I had knew about this site before I had this done. It makes me so mad because before I had mine did in February. The Dr. gave me a disk to look at, showing other people talking about how it worked for them. And how great they felt..."Right" what else would it say. Plus I had to see a Therapist to evaluate me before I had it, and give the Dr. an okay that I was of sound mind to have it. I see my Dr. tomorrow and will be discussing things with him about how I feel.  I had been leaning toward getting this SCS out, but after hearing all these horror story, I don't think so.  I only have had this for 3 months, not using it because of the pain in my left leg feet and arm, and my right side depending on the level I put the remote on. I am leaning more to join the Class Action, if they get it started. I was told that it would take about 50% of my pain away. "Not". Even my ass hurt and not on the side the battery is on sometime. I am so disappointed! Again I am sorry to hear the pain you are in, and praying that mine don't get that far. I think I won't bother getting it out, unless there are more problems with out using it. Again thank you for your input, it really help me with how I will go. May God bless you with less pain. Have a great day, Ha a better day. Debra

  • Brashbuzz
    Brashbuzz foxy32222

    Posted

    I am so sorry to hear about your problems with it Debra. I am just erring on the side of caution now and think if this is how I am now I’m not willing to risk it getting even worse. While it’s terrible now, I’ve lasted this long and I can manage it. Goodness knows what else could happen if I had another surgery. I mean the battery had been redone 3 times already between 2013 and 2017. My last surgery when they redid it was horrendous. I think something went really wrong and I trust my Dr implicitly so it’s a no for me for now . As long as the lead doesn’t end up protruding from my skin (as it keeps moving) I’m not doing anything for now. I wish you all the very best! PS class action? I knew nothing about one? 
    • foxy32222
      foxy32222 Brashbuzz

      Posted

      Yes, I left a message with a lady name Brenda. Have not heard back yet. I called yesterday. Look at the discussion you should find it. Brenda left her phone number. Keep me updated and I will you...
    • tamra73559
      tamra73559 foxy32222

      Posted

      I too want to know about the class action?

      I can find no discussion where a Brenda has talked about it and left her phone number. 

  • Brashbuzz
    Brashbuzz foxy32222

    Posted

    I’m in Australia so it probably wouldn’t be relevant to me, I’m just very interested in the details as to what’s happening is all after all the issues I’ve had. I hope you get a return call smile
    • Disley66
      Disley66 Brashbuzz

      Posted

      I’m in Australia to.. in the Blue Mountains ! Apart from me, you are the only other person I have come across on here who is from Australia.  Have you actually got an implant.  I haven’t been on here for a while as not been too crash hot and haven’t read your comments. Mine was in my abdomen whereas in America they all seem to be in their lower backs
    • Brashbuzz
      Brashbuzz Disley66

      Posted

      Well hello from the same time zone! 😂

      Yes I’ve had one since 2013. I had a replacement due to issues 18 months ago and it’s been a nightmare! Mine is mid spine and sacral spine. I’ve also had 3 batteries so far. 

      Mine is for a disease and subsequent disability. I never had back issues until the last surgery when they replaced the lead (due to a fractured lead) and added an extra one. Ever since then my back has been a nightmare on top of the original problems.

      What issues did you have if you don’t mind me asking that made you say your ‘body’ reacted badly so you had it removed? I’m so sorry you have been having such a bad time & also that that happened to you. You are also my first Aussie experience on here! 💕

  • Disley66
    Disley66 foxy32222

    Posted

    Hi there 

    After 12 month I had mine removed.  It worked well but my “body” reacted really badly to it.  Shame really. 

    • Brashbuzz
      Brashbuzz Disley66

      Posted

      Hi Disey66,

      I’m sorry to hear you had those problems, what a shame ??.

      What do you mean by reacted badly if you don’t mind me asking? What happened? Reacted how? Just curious in case maybe that’s some of what’s been happening with me all along. I know some of my issues like the migrated lead etc but it’s never felt right since they put the new one in. Thanks heaps 😊

    • foxy32222
      foxy32222 Disley66

      Posted

      Thanks for the info. But what happened? Are you in more pain, and where? Should I get mine out since I only had it 4  months? Will it better to do it now
    • Disley66
      Disley66 Brashbuzz

      Posted

      Hi there Brash and also Foxy32222

      I just wrote this long in depth reply to you both and an “ad” popped up in the middle of it and when I tried to get rid of it I lost the lost! Don’t you just hate that?

      Anyway before I start again do you know whether there is a way of attaching photos on this site?  I would just like to show you what I ended up with. Happy to send details by email or whatever. 

      Aaaaaaanyway here we go. 

      I was really happy with the pain relief I got from “ET” (my pet name for my implant) but it was positioned just slightly above my waist which was a real nuisance when I tried to bend so I asked my Specialist if he could move it which he did.  After the usual recovery time I had pain in my right side under my ribs and lower back pain and just felt “revolting”.... it got worse and then I developed a “spot” on the end of the scar on my lower back where the leads had been “fed” in.  I wasn’t too bothered at first but it grew rather quickly and as  I couldn’t see it, only feel it, I made an appointment to see my GP that day. It was also catching on my waistband and I was worried it would bleed etc etc.  My GP, to my chagrin, said it was “nothing” and to just put a bandaid over it if I was worried.  

      The next day I asked my partner to take a pic of it with my phone (God bless smart phones)  and when I saw it I nearly died.

      Seriously, it was PURPLE.....if I could attach the photo I would.  

      I was worried and  uncomfortable and definitely NOT happy with the GP’s “non-diagnosis” so called my Specialist to try and see him ASAP.  When I explained the situation to his assistant she got me in at 12pm the next day. His name in Professor Sundaraj and he is brilliant.  

      I was quite unprepared for his reaction when he saw my back.  “It all has to be removed” ......I thought he meant the “spot” but he said “I am worried it may have leaked through the scar and set up a staff  infection inside which could migrate to your spine and I can not take that chance so I want to completely  the battery and leads and if I could I would operate immediately “..

      He spoke with the hospital and I was booked in for first thing the next morning.  

      I stayed in for 2 days then home for yet another recovery which took longer this time as I had 3 separate incisions on my head and one on my abdomen. He removed the “growth” first and had to go in quite a way to ensure he got it all.  Thank God the infection had not reached far enough to cause long term damage.   

      I really was expecting my neuropathy in my lower left leg and foot  to return immediately but weeks went by with nothing and the Professor said it was “Neuro plasticity” ....the brain was tricked, after 12 months having “ET” , in to thinking there was no pain.  Anyway, it did start coming back a few weeks ago but nothing I can’t cope with right now and nothing compared to the 12 months of pain from my back, abdomen and side caused by ET.....

      Soooooo, I feel as if I have “lost” a whole year !! It isn’t anyone’s fault, just bad luck. It definitely did work for me personally but unfortunately my body was not happy with the “Invasion”!

      The Professor has talked to me about a “relatively”  new treatment called “Scrambler Therapy”........Once things have completely settled down I will look in to it, but at the moment I am coping fine.  I might even try acupuncture!! Who knows, it might just work. 

      Sorry this has been a long post but I wanted to really “paint” the picture.  

    • Disley66
      Disley66

      Posted

      Sorry, I should have read it before posting.  I have 2 edits.  

      (No.1)

      I had 3 separate incisions on my “head” (should be “ BACK”)  and one on my abdomen.

      (No.2)

      Professor said it was “Neuro plasticity“

      should be   NEURAL PLASTICITY” 

    • Disley66
      Disley66 foxy32222

      Posted

      Hi there foxy

      I have replied to both you and Brashbuzz together. 

      I must say that some of the absolute DISASTERS caused by these implants is truly nightmare worthy.  My problems were absolutely NOTHING compared to many of you.  Some of the stories I have read are horrendous.  

    • Brashbuzz
      Brashbuzz Disley66

      Posted

      I am so sorry that happened! I get what you are saying though. I trust my Dr implicitly which is why after the last time I’m not doing anything. If he can’t do it no one can. It is what it is and my disease isn’t easy to deal with. I was diagnosed with Neural Plasticity in 2013 as my brain was working out the Stim Programming to quickly and the pain signals were getting through to my brain over the Stim quickly. 
    • foxy32222
      foxy32222 Disley66

      Posted

      HI DISLEY66,

      ?I WAS BLOWN AWAY TO HEAR YOUR STORY! PRAISE GOD BE THE GLORY! MY GOD I AM SO SORRY THAT YOU HAD TO ENDURE WHAT YOU WENT THROUGH.  

      ?I HAVE HAD MY SCS FOR 3 MONTHS NOW AND SO FAR, I HAD ISSUES USING IT, BECAUSE IT VIBRATES MY LEFT SIDE OF MY BODY LEGS, FEET, AND SIDE.  SO I TURNED THE REMOTE DOWN, IT DON'T BOTHER ME AS MUCH.  YESTERDAY, I WENT TO MY DR. AND INFORMED HIM, AND HE TOLD ME TO CONTINUE IF I GET RELIEF, AND AS SOON AS I WANT IT REMOVED HE WILL REMOVE IT.  RIGHT NOW, I DON'T USE IT MUCH, HOWEVER I HAVE IT ON NOW, WITH RELIEF, BUT I STILL FEEL VIBES IN MY LEFT LEG AND FEET. IT'S NOT HURTING, SO I WILL CONTINUE TO USE IT.

      ?YOU DID PAINT A PICTURE SWEETIE, AND I WILL REMEMBER YOUR STORY, I WILL SAY A PRAYER FOR YOUR COMPLETE RECOVERY. THANK GOD THEY CAUGHT IT BEFORE IT GOT WORSE.

      THANKS AGAIN, FOR YOUR STORY, AND MAY GOD CONTINUE TO BLESS YOU!

      DEBRA

    • Disley66
      Disley66 foxy32222

      Posted

      Hi Debra

      Thank you so much for your thoughts and prayers.   

      I am so happy to hear the device is pretty good for you.  I had mine set on about 9 permanently. I never turned it off.  If it was too high I would get little shocks but that was easily fixed.  I am praying and doing heaps of “positive affirmations” that I read in Wayne Dwyer’s books.  I am doing ok and the nighttime is when I notice it most but I try to keep the leg really warm as I know that in cold weather the blood is drawn from the extremities to protect vital organs so that exacerbates nerve pain.    I think I am coping so much better because the pain I had elsewhere throughout my body BECAUSE of the device was worse than the pain it was put in to control. 

      Thank you again Debra and you will be in my prayers also.  Much love, Sue xx

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