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Spinal Cord Stimulator

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khi
khi

Has anyone had a spinal cord stimulator,it has been one suggestion for my husband who is still suffering after 4 years after his first surgery, he has had a further op two years ago and is still suffering immense pain, has weakness in his leg and finds walking difficult and now needs a stick to walk with. I am hoping someone has had a spinal cord stimulator that has had similar condition as my husband because as I understand it it is only a minor op to implant.  I think the other option is fusion which I have heard horror stories about, especially as he doesn't seem to have success with major ops.  Thanks

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  • james15716
    james15716 khi

    Posted

    I have been dealing with my chronic pain for over 20 years. I wish that I had good news for you and your husband. I have had 3 injuries and I had surgery today for a 3rd scs (spinal cord stimulator). The trial stimulator is for 1 week and, then they will remove the old one and implant a new unit . The first 2 stimulators had failed due to broken leads, but my understanding of the new technology is that, they are made of much stronger materials now as well as running at higher frequencies. Also if he is experiencing chronic pain could he have RSD/CRPS(Reflex Sympathetic Dystrophy/Complex Regional Pain Symdrome)? I am also letting you know that in 2009 I ended up in a wheelchair due to pain. Hopefully he just has siotica. There is a lot of free onformation about both types of chronic pain, also be specific about the tyoe of pain he is experiencing as well as, the pain levels.
    • kathy07828
      kathy07828 james15716

      Posted

      Hi James. I can't believe that you've had broken leads on your first two stimulators! We're they working properly and providing pain relief for any length of time? Are you in trial now with the Nevro? Sure hope this one finally gives you the relief you deserve and a happier quality of life. ~kathy
  • Macca57
    Macca57 khi

    Posted

    Hi KHI,

    I have had back pain/problems for the past 20 odd years, I have had two implants put in (one after the other) the first gave me  little relief, so after a year or two it was decided to then change to the same type of implant but different type which gave great relief  for a while until my body got used to it. I have now been put forward for the Nevro implant (here's hoping), as for the op it is not a big op and your back up on your feet within hours. It feels funny to get used to, but the relief it gives you is well worth the op.  I hope your husband every blessing in his op (nothing to worry about honest) and to both of you for a pain free life afterwards. Take care and God bless you both.

  • Cjp17
    Cjp17 khi

    Posted

    Hi, I don't know your husband's back problem history or what his surgeries were   on his back included, but a fusion  can be helpful if not life changing.  A  fusion will remove the soft disk and then grow the two vertebra together with more science magic.  I had two fusions after a car accident after they found that the vertebra was cracked.  There are at times problems and complications but it is on an individual basis.  I would recommend going to a neurosurgeon for surgery because they are the docs that look after the nerves and that's where the pain is.  Also ask your doctors who they would go to in your area.  Conservative doctors are better for most problems imo, I don't want to be doing surgery on an experimental basis unless I have no where to turn.  Your husband may only improve with surgery.  The neurostimulators only mask pain so if he as a pinched nerve or a narrowing of the spinal column he pretty much needs surgery if the surgeon or surgeons say so.   I had advice from a doctor in the family and he thought the best thing to do was to go to a neurologist for the initial work up.  He usually can give you a straight answer about what you really need.  He has nothing to gain in his diagnosis.  (no big surgery) You can go for a consultation at any time.  My surgery wasn't fun but I was shopping a week after.  My result was great and the pain has gone.  If the nerves are compressed and that is causing the leg weakness my non medical opinion is the yes he does need surgery.  These nerves won't uncompress usually and stenosis does not reverse itself.  I was warned that if I delayed the surgery I could cause more damage in my case but I do think the same applies for a pinched nerve or stenosis.  It is scary but most back surgeries have a good outcome.  Ask the doctors what they think his prognosis would be if he had the surgery.  He is going to be out of work soon if he doesn't do something so sometimes you have to throw fear out the window.  If he has problems with major operations can you identify why that is and then plan a defense for these issues?  Is it just a feeling of bad luck around major surgeries?  I get that but an implant may go more harm than good if the underlying back issues aren't taken care of by a surgeon.  I wish I knew what surgeries he had, diskectomy?  Did they remove a bit of disk to relieve a nerve?  Is it the surgeries that caused the problem or the pinched nerve?  The pain doctors may not think you a candidate for an implant if you have issues that could be relieved with surgery.  The implants are very expensive and to be approved they are carefully scrutinized.  Everyone should have a healthy fear of surgery is it not to be take lightly but sometimes you just have to do it.  Your husband needs to find a doctor who will listen to his fears to help him process this decision.  Hope your husband can find a healthier, more pain free life in the future.  Best of luck, Cathy
  • socksmom
    socksmom khi

    Posted

    Yes I am having very strange things happening but was told nothing to do with trial implant, but I very well knew better! It started when I sat up after procedure but was just ignored for three weeks. Was not procedure problen was coincidence.  I had to go to ER 3rd week breathing problems among others I won"t go into.   I came across this.  Nothing was  explained like any of this before my trial, just minimually evasive surgery but as with any surgery may..........I don't think the docs that even are apprised of the actual risks or are not trained properly to deal with this type of spine surgery?   Could we have this:

                                          Arachnoiditis ?

    As the disease progresses, symptoms may become more severe or even permanent. Many people with arachnoiditis are unable to work and suffer significant disability because they are in constant pain.

    Causes of Arachnoiditis

    Inflammation of the arachnoid can lead to the formation of scar tissue and can cause the spinal nerves to stick together and malfunction. The arachnoid can become inflamed because of an irritation from one of the following sources:

    Direct injury to the spine.

    Chemicals: Dye used in myelograms (diagnostic tests in which a dye called radiographic contrast media is injected into the area surrounding the spinal cord and nerves) have been blamed for some cases of arachnoiditis. The radiographic contrast media responsible for this is no longer used, however. Also, there is concern that the preservatives found in epidural steroid injections may cause arachnoiditis.

    Infection from bacteria or viruses: Infections such as viral and fungal meningitis or tuberculosis can affect the spine.

    Chronic compression of spinal nerves: Causes for this compression include chronic degenerative disc disease or advanced spinal stenosis (narrowing of spinal column).

    Complications from spinal surgery or other invasive spinal procedures: Similar causes include multiple lumbar (lower back) punctures.

    Diagnosing Arachnoiditis

    Diagnosing arachnoiditis can be difficult, but tests such as the CAT scan (computerized axial tomography) or MRI (magnetic resonance imaging) have helped with diagnosis. A test called an electromyogram (EMG) can assess the severity of the ongoing damage to affected nerve roots by using electrical impulses to check nerve function.

    Note: Myelograms with the radiographic contrast currently in use, combined with CAT scanning, are not considered to be responsible for causing arachnoiditis or causing it to worsen.

  • Jenjo683
    Jenjo683 khi

    Posted

    I had the NEVRO implanted 6/21, and now I am regretting it. It is buldging out of my back. I cannot sit, or lay down without being in constant pain. I always have an ice pack with me. When I had my first SCS (Boston Scientific) I was basically pain free. A week out of surgery, I still cannot wear my normal clothing, it is still sweats. I am to the point where I want this thing out. I cannot take this pain anymore. If i accidently bump into something, I'm in tons of pain. When next week comes, and it is time for me to go back to work, I honestly do not know how I am going to be able to do it. I cant get my pants on, sit down to drive to work, sit at work or let alone sleep at night. Can anyone give me suggestions for when I go to the Dr's. on Thursday on how to approach him with this topic?

    Thanks,

    ?Jenn

    • kat031961
      kat031961 Jenjo683

      Posted

      Jen, Yes I've had the stimulator back in 2011. Not the Norvo, but a same concept. They now want to upgrade mine to it. When I had the 1st one in, same sinerioo, it was big, bulky and had to wear sweats until it healed under the skin. It took a while before I could wear jeans and yes one of the most painful surgeries I've had. Now I want it out! I now have spinal stenosis and nerve damage in both of my legs, so I don't see how an upgrade is going to help, I get it, better unit. Everyday I'm still in severe pain and work from home because of it. I hope that you can deal with the pain a bit more and give it a chance to heal and use the unit faithfully. Keep in touch, pls Kat Lot's of Luck with it!

    • Jenjo683
      Jenjo683 kat031961

      Posted

      Hi Kathleen,

      I am trying my hardest to keep this thing in. Unfortunately I am unable to be a mom to my 10 year old son. He understands I had surgery, but wants me to do the minimal things that I cannot do. Before the implant I was able to do a lot of more things with him, just pay for it later. We will see what the Dr says Thursday

    • kat031961
      kat031961 Jenjo683

      Posted

      Wow, I can't imagine having a 10 yr old. Although my kids are grown, I have been there, in pain raising 2 children. And pd for the Pain later. Good luck Thurs on your appt! Praying for you and to feel much better sooner than later ?

    • cynthia70714
      cynthia70714 Jenjo683

      Posted

      Jenjo83,

      You are not alone this also happened to me, I had mine implanted on Sept 2015 and it was push out through my skin you could see the outline of it, finally after being in bed for 3 months and no energy the stimulator the one we do with the remote shut down so I could finally do I little bit but not much so much pain, finally had the revision surgery to put it in my abdomen and again it's starting push through what was supposed to happen was it was supposed to be turned off, I'm so sick of this pain, I noticed I've have become more down cause I'm in pain, the rep for Nevro put me on a schedule and no go, I'm now on program 3 I turned it off and I'm calling him tomorrow to tell him to shut it down, I'm sick of being in pain more so than before this stupid surgery should of said no, I to regret it but before revision my dr called me a failed SCS and was gonna shut down stimulator after moving it and was going to put the st Jude's in a little later, but the rep talked him out of it. And stuck with this I can't do this anymore I want it off. And I'm going to just shut it down I can't do it.

      You are not alone but try and get your dr to remove it or shut it down after a revision surgery cause it just doesn't work for me, and im sure you too!

      I want to scream so bad started crying the other day because I can't do it.

      My advice is to anyone who is having problems don't let other ppl make your decisions on wether it stays on or off or gets taken out its our bodies and we should have the right to say no to this.

      Good luck with your appointment and don'tet them talk you out of anything

      Best of luck I'll be thinking of you.

      Cynthia ( Cindy)

      PS we shouldn't have to be in pain like this

    • Jenjo683
      Jenjo683 cynthia70714

      Posted

      I plan on standing my ground with the Dr. My mom is going with me to my appointment to let the Dr know the placement being too close to the skin isn't working. With the last SCS. I was up walking, sitting laying down with no problems. I even told my Dr prior to the surgery that I needed the battery to be deeper now, from the last one, because I had lost so much weight and I could actually flip it if I wanted to. He guaranteed me that it would be. Well I had my son take pictures today of the site, and to say the least, you can see where the battery is sitting in my back. I just want to wear my jeans, and drive. I want to go back to work, and I don't see that happening! ??

    • kat031961
      kat031961 Jenjo683

      Posted

      I don't blame you! I'm not sure if I'm getting the upgrade, I' live alone, by choice I work, take care of my house, my bills and everything. I can't afford to be out of work any length of time. I've already had almost my 3 week's vacation, so if I do have anything else done, it'll be surgery not messing with a unit I already have, and like you, I Want It Out! Feel better and feel free to email via this sight if you'd like. I'm curious as to what your Dr thinks. Kat ??

    • Jenjo683
      Jenjo683 kat031961

      Posted

      I'll be moving out on my own here within the next couple of months. I just bought a house, so I definitely can't be dealing with this pain and missing work constantly. Even though it is covered since I fell at work 5 and a half years ago. It's just a pain in the rear to deal with them!

    • kat031961
      kat031961 cynthia70714

      Posted

      Thank you Cynthia! This is exactly as I feel, I'm not going to have an upgrade when the one I have was so painful the 1st time.

      Kat

    • Jenjo683
      Jenjo683

      Posted

      Does anyone know if there are any pictures/images of how the completed NEVRO battery implant should look like, so I have something to compare mine too? I feel if I were to post mine out here it would just gross everyone out.
    • kat031961
      kat031961 Jenjo683

      Posted

      I didn't get the Norvo, but maybe someone else has a photo of it, my unit was inserted through St Judd, "2011" and I'm on here to see if it's worth it for an upgrade. I've decided if I get anything done, it would be to take it out, and have them clean up my spine as I also have cement on my spine from a different surgery that failed. I've had 5 surgeries already. Hopefully someone who has it can submit you a photo. Kat ??

    • cynthia70714
      cynthia70714 Jenjo683

      Posted

      Jenjo683,

      You could see the whole battery on my backside I had a pic but I think I deleted it because it was grossing me out. But post it I'll let you know if mine was the same way, you can send a private message to me go to my profile and it tell you how.

      Best wishes

      Cynthia (Cindy)

    • Bungle66
      Bungle66 Jenjo683

      Posted

      Hi Jenjo and everyone,

      Be very careful before going down the route of having the battery removed. That is not always the magic bullet we hope it will be. I've had two stimulators, a Medtronic SCS and also a new to the UK Dorsal Root Ganglion stimulator (well they never actually were able to place that one properly). I eventually had my battery (an all the hardware) removed in April of this year. It was like yours and Cindy's protruding massively from my left butt cheek and was soooo painful. You could even see it through thick jeans. Sadly things haven't improved since they removed it. I imagine that they have cut so deep into nerve infested tissue that it now sends shooting pains down both legs when I touch the scar. I am unable to wear any underpants or trousers without being in constant and unbearable pain. I now live my life in PJ's, which is not as much fun as you might think! I've just had another procedure (last Tuesday) called a dorsal root ganglion pulsed radio frequency ablation, where they electrocute the nerve endings with the hope of reducuing the pain. Like everything else I've had done though in my case it's made the pain even worse. I feel like crying and cannot imagine ever being close to being free of pain ever again. I am having to decide whether to try again with a newer version of a scs. I have no idea what to do and life seems real bleak. I hope if/when you have yours removed that you feel better. Good luck and BIG hugs from across the pond!!

      Rgds Graham

    • Jenjo683
      Jenjo683 Bungle66

      Posted

      I had the Boston Scientific SCS that I couldn't use because my dad messed the leads up not even a month after surgery. So almost 3 years later they wanted me to use this one. They used the old leads because they were in perfect place. Now, they can leave the leads and take the battery and do whatever they want with it. I can't even get my clothes on for work. I am supposed to be going back to work Tuesday. I don't see it even possible for a clothing stand point let alone me having to drive 45 minutes one way. It's causing pain in my right leg for braking. Major problem during rush hour!!

    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Graham

      Oh gosh!!!! I was so hoping you would find relief in the new one, I ask my dr about it and said that it wouldn't do me any good, he lied to me listened to the rep and left this piece of crap in and on, I just blasted the rep told him to shut it down or I will I said I'm done of being in pain I'm like a Guinea pig let's try this I went through hell this past month every 2 days changing the program on the remote I was so upset from the pain I just cried and cried, I have not heard back from the rep so I'm letting the battery die out, I can't do this I'm in so much pain and noone cares, (@the office) finally after trying to get a back brace I finally got a fire under their arses and got one they wanted me to pay 250.00 for a brace that I should be able to get through insurance ugh I want to pull my hair out, but I'm so done with this unit. I'm so sick of Drs and reps making us their guinea pigs they don't go through the pain so why should they care, I so want to call the company and scream at someone in there, I just have had it, I was wearing sweats for months and now its summer and I am trying to wear normal shorts since the revision surgery so now the battery is in my abdomen I hope you find some relief I feel like you and I have been to the ends of our nerves I wonder if we have any left take care of yourself I'm here for you do you still have my email address I have u in my phone if you need to vent hit me up in a email, your friend from across the pond.

      Cindy lots of hugs cause I know what you are going through your not alone!!! ??

    • kat031961
      kat031961 Bungle66

      Posted

      Wow, I'm so sorry for your pain and suffering. I thought of getting mine removed, but the bulge will be fine for now. I can't see myself getting an upgrade at this point.

      I'm going to truly my best friend walk off the pain and try p/t as well!

      Ty for sharing this with us

      Lots of Luck to all of you ?

    • Jenjo683
      Jenjo683

      Posted

      I went to the Dr today. He did agree with me that the battery is sitting to high to the skin.He wants to consult with a neurosurgeon, about having it placed deeper down under muscle. He currently took me off work for another 2 weeks because of the pain I am having. I follow up with my Dr again on July 12th where he will make his decision on the revision surgery.
    • cynthia70714
      cynthia70714 Jenjo683

      Posted

      Jenjo683,

      That's good I had it done but they couldn't go under any farther because I had old scar tissue so they had to go to the abdomen

      Keep us updated

      Cynthia (Cindy)

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