neurostimulators

sherry Community Member January 08, 2008
  • Hi, I'm a newbie to this website and have a few questions. I just had another epidural steroid injection yesterday. They do help my leg/back pain temporarely, but now my Dr wants me to consider a neurostimulator. If any of you out there have one I would love to have input on this subject.
21 Comments
  • Anonymous
    SUE
    Feb. 26, 2013

    I have had 3 lumbar fusions which were fine until I had knee surgery 15 months ago.  As I was going into surgery I was told I would have a spinal anesthetic which I told them I did not want, but the anesthesiologist said it would be best.  4 months after surgery I woke up one morning with severe right side pain.  After xray I was told the right...

    RHMLucky777

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    I have had 3 lumbar fusions which were fine until I had knee surgery 15 months ago.  As I was going into surgery I was told I would have a spinal anesthetic which I told them I did not want, but the anesthesiologist said it would be best.  4 months after surgery I woke up one morning with severe right side pain.  After xray I was told the right 12th rib was broken also scoliosis and osteopenia.  The pain continued to intensify over months and I went to an orthopedic sugeon and was told he would not do surgery on me.  My lumbar fusion had tilted to the right and I am bone on bone at T12, L1.  One Dr told me I should not have had a spinal anesthetic as it weakens the muscles in the back and could have resulted in the lumbar shift.  My pain management Dr sent me to a neurosurgeon who refused to do surgery because the chance of paralysis with surgical intervention in the T/L area.  I tried the temporary neurostimulator and had relief and am now waiting for Medicare to approve the permanent implant.  I am 80 and have always been active physically and would like to have my life back again.

  • Nicoletti
    Mar. 06, 2008
    I have had my neuro stim for about 4 years.It started well at 80-90% when it was first installed in 2004. Since then I had a revision of the unit in 2006 ,because of the fall I took.My pain doc said it is the gold standard for the spinal condition I have,which is called adhesive arachnoiditis. My pain always moves around,since it is an imflamatory,nerve combo...
    RHMLucky777
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    I have had my neuro stim for about 4 years.It started well at 80-90% when it was first installed in 2004. Since then I had a revision of the unit in 2006 ,because of the fall I took.My pain doc said it is the gold standard for the spinal condition I have,which is called adhesive arachnoiditis. My pain always moves around,since it is an imflamatory,nerve combo pain.My pain now with additonal meds is running about a 2-3. Which stim are you looking at? Mine is the boston scientific formerly aka advanced bionics precision unit.You can discover more info on the units on the site, boston scientific or its affiliate site" race against pain .com"  I hope this helps.Blessings to you at this difficult time. Nicoletti.Cheesy
    • sherry
      Mar. 06, 2008
      Thanks for writing to me about neurostimulators. I meet with my pain doc on Monday to discuss it. I am hopimg to put it off until this fall. I had lap-band surgery on 2/26 so I would like to see if the weight loss helps with the leg pain. Since early December I have lost 30# and I am just starting to notice a slight decrease in my leg pain, but then i am off...
      RHMLucky777
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      Thanks for writing to me about neurostimulators. I meet with my pain doc on Monday to discuss it. I am hopimg to put it off until this fall. I had lap-band surgery on 2/26 so I would like to see if the weight loss helps with the leg pain. Since early December I have lost 30# and I am just starting to notice a slight decrease in my leg pain, but then i am off of work on medical leave right now. Whenever I am off for a few days my leg pain gets better. The real test will be when I go back to work on 3/18. Have you had any problems with your stimulator, like zapping you at times or goimg off when you walk through theft detectors? About 90-95% of the info I have found on the internet has been positive. There have been a few negative comments that make me a little nervous. Also, the cost just floors me! Again, thanks for your input. It really helps. Sherry
    • Nicki
      Oct. 20, 2010

      I just found this site while searching for others with the same issues that I deal with.  I am 33 and have had chronic back and leg pain since high school.  I have a severe form of degenerative disc disease and the bottom three discs are almost completely gone.  All of the other discs in my back have already shown many different levels of deterioration...

      RHMLucky777

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      I just found this site while searching for others with the same issues that I deal with.  I am 33 and have had chronic back and leg pain since high school.  I have a severe form of degenerative disc disease and the bottom three discs are almost completely gone.  All of the other discs in my back have already shown many different levels of deterioration and many of my facet joints in my spine are touching and rubbing against each other.  I have been through almost every pain management therapy you could possible have.  I also had to finally keep pushing the dr's to keep running tests until they figured out what was wrong and where the pain was coming from.  I started going to the dr my first year of college and it was 3-4 years later before I got a diagnosis.  I did steroid injections for about 2 years, but I never could make it to the next shot without the pain returning.  The dr's wanted to see if a fusion was an option and did a discogram(one of the worst procedures you could ever have!) to determine if one or two of the three discs were worse than the others.  They would not do a 4 level spinal fusion on someone as young as me.  The results were that all three were too damaged.  The only thing left was a pain pump or neurostimulators.  I chose the neurostimulators in order to get off of all of the pain meds.  I was on morphine + vicotin and still trying to be a teacher and coach.  I had two neurostimulators implanted this past May and it has truly changed my life!  I am functional!  It is a hassle having to keep them both charged, but I love them!  I have one neurostim for my back and one for my legs.  I control the levels of both with an external remote and have not felt any differences when walking through the security doors in stores yet.  I have to be extra careful as to not lift anything heavy or be as active as I once was, but it truly is soooo much better!

    • sherry
      Oct. 21, 2010

      Nikki, I am very happy that you responded to my comment. That's great that you have had so much success with the neurostimulators. I am still considering the stimulators, but currently I have an appt. with the neurosurgeon on 11/2/10. I had another MRI about 6 weeks ago and it was much worse. It not only showed the disc degenration, bulging discs and scoliosis...

      RHMLucky777

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      Nikki, I am very happy that you responded to my comment. That's great that you have had so much success with the neurostimulators. I am still considering the stimulators, but currently I have an appt. with the neurosurgeon on 11/2/10. I had another MRI about 6 weeks ago and it was much worse. It not only showed the disc degenration, bulging discs and scoliosis that we were already aware of, but now it is showing moderatre to severe nerve impidgement at the L5-S1 level. My doctor wanted me to see the surgeon because we are both concerned about permenant nerve damage. I am only 44 yrs old so I am hoping that if I have surgery there is a good chance that I may be able to get back some or all of my nerve function. Again, I am very happy about your success. Everytime I hear a positive story it gives me a little more hope and for that I am grateful. I try to stay a "glass half full" kind of person and the positive stories help me with that.

    • JRS
      JRS
      Nov. 12, 2010

      Hello, I guess I am one more than this type of device has been recommended for. I have suffered from back issues for about 20 years, my back is a mess, bone on bone and other issues. I have struggled with radicular pain off and on for at least 12 years, but for the past 7 it has been infrequent until I was rear ended in June. I was out of work for 3 month,...

      RHMLucky777

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      Hello, I guess I am one more than this type of device has been recommended for. I have suffered from back issues for about 20 years, my back is a mess, bone on bone and other issues. I have struggled with radicular pain off and on for at least 12 years, but for the past 7 it has been infrequent until I was rear ended in June. I was out of work for 3 month, the pain radiates down my left leg,lower back is an issue but has been for years. The first epidoral was ok and I got some relief, the second one was no help. Doc has recommended a neurostimulation device. I watched the video  and was ok until they mentioned paralysis as a possible complication, so I guess I need a lot more information. At 59 and 3 years from retiring I had  hoped these years would be my best, but then a texting teen driving too fast in a jeep really did a number on my back. Any input would be appreciated.

       

      Thanks

      JRS

    • sherry
      Nov. 16, 2010

      Hi JRS. Let me start by saying I'm sorry about your accident. So many careless drivers are out there with no concern for others. It's terrible. I would suggest giving the epidural steroid injection another chance. Then, if you do not have any relief, try some of the less invasive therapies. I have tried gentle flow yoga (my favorite), healing touch, accupuncture,...

      RHMLucky777

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      Hi JRS. Let me start by saying I'm sorry about your accident. So many careless drivers are out there with no concern for others. It's terrible. I would suggest giving the epidural steroid injection another chance. Then, if you do not have any relief, try some of the less invasive therapies. I have tried gentle flow yoga (my favorite), healing touch, accupuncture, chiropractor, massage therapy, postural restoration through a well-established physical therapist, etc.There are other options out there but I would try several of these before any of the more invasive therapies. I have done all of these and now the last doctor I seen wants to fuse my vertebraes from T3-S1. This would mean that I would not be able to bend or twist at the waist ever again. He had me fit for a TLSO brace which mimics the fusion so I could see if it helps and also so I could see how immobile I will be. The brace does help with the leg pain, but causes a bit more back pain. The back pain is more of a stiffness & achy feeling, but the leg pain is so much better. I am still so clumsy with the brace. I never realized how much stuff I dropped to the floor before! I am not planning on having the surgery anytime soon. I need to get other things in my life straigtened out first. I wore a similar brace when I was a teen (scoliosis), so I know what I'm getting into with the brace, but it still is so inconvient that it's frustrating. Well, good luck to you and I hope things start going your way. Take care, Sherry.

    • Anonymous
      Dottie
      Feb. 19, 2012

      I have a trial neurostimulator now for lower back pain.  It is under skin on each side of back with lines to battery and a remote to change settings.  My back is sore and feels like something like needles sticking my skin on back.  It has not helped my leg pain, of which nurse said I might have to have the other system in spine for leg pain too....

      RHMLucky777

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      I have a trial neurostimulator now for lower back pain.  It is under skin on each side of back with lines to battery and a remote to change settings.  My back is sore and feels like something like needles sticking my skin on back.  It has not helped my leg pain, of which nurse said I might have to have the other system in spine for leg pain too.  I am almost afraid to have the other in spine becauseyou can never have an MRI and I have had back surgery 2 yrs ago and heart (4) by-pass surgery 4 yrs ago.  I am 74 yrs young.  What do you think I should do?  I may go to my pain doctor for advice and family doc first.   Thanks for any advice.

    • sherry
      Mar. 04, 2012

      Hi Dottie. Wow! You've been through a lot haven't you? Just like I suggested to the previous person I talked to: you could try postural restoration, make sure it is through a well-trained physical therapist, accupuncture, yoga, etc. I get a back massage every month & that helps so much to losen the tight muscles in my back. I am on medication to help with...

      RHMLucky777

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      Hi Dottie. Wow! You've been through a lot haven't you? Just like I suggested to the previous person I talked to: you could try postural restoration, make sure it is through a well-trained physical therapist, accupuncture, yoga, etc. I get a back massage every month & that helps so much to losen the tight muscles in my back. I am on medication to help with pain & muscle spasms, also. How long have you had the neurostimulator? Are you still on the trial before the more permanent stimulator? If it is not working for you then you need to speak to the doctor who inserted it. What ever you do please make sure the physician or therapist you are seeing is well-trained, ask around, look on the internet, etc. Good luck, Dottie.

    • Dottie Wilson
      Mar. 05, 2012

      Hi, I did complete the trial stimulator for my lower back. They(doctor-Neurosurgeon) did remove the trial one.  I am waiting on the new trial stimulator which will help me walk better with less pain.  I went to my pain mainagement doctor while I had the trial on my back and he encouraged me to let my Neurosurgeon put in the right one for leg pain....

      RHMLucky777

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      Hi, I did complete the trial stimulator for my lower back. They(doctor-Neurosurgeon) did remove the trial one.  I am waiting on the new trial stimulator which will help me walk better with less pain.  I went to my pain mainagement doctor while I had the trial on my back and he encouraged me to let my Neurosurgeon put in the right one for leg pain.  He said he had patients who had not walked for a long while and were in wheelchairs that could walk now and were out of a lot of pain and happy. I will follow the plan after hearing him.  I am waiting now for the other stimulator.  Hope this helps someone.  Stay in touch or let me hear helpful info.  Dottie Wilson

  • Kimberly175
    Feb. 04, 2008

    Hi Sherry,

     

    Im kimberly, ive been on this site for about a month now. There are alot of great people on this site! some which have made me feel SO much better just having someone who understands "chronic pain" ya know what i mean? either way, i couldnt help but read about the nerve stimulator. I have a TENS unit that i use, not sure if you've...

    RHMLucky777

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    Hi Sherry,

     

    Im kimberly, ive been on this site for about a month now. There are alot of great people on this site! some which have made me feel SO much better just having someone who understands "chronic pain" ya know what i mean? either way, i couldnt help but read about the nerve stimulator. I have a TENS unit that i use, not sure if you've ever tried that but i was thinking maybe that would be worth a try before you decide to have it implanted. Just a thought...... i use mine when my pain gets really bad, it numbs my back up pretty good if you were it for a couple hours or so. The longer you were it, the more numb my back gets, so that part is kind of nice. Im in the same boat as far as surgies go. My doctor has told me im facing possible surgery.....again. I already had one procedure done 8/06 but im still in soo soo much pain. I hate it. I dont even know that i want to have surgery again. They have told me at this point its either having a fusion done or getting a pain pump inplanted. Ugh! they both scare me! im only 24..almost and even though they tell me i have the spine of a 80yr old women, im scared to make the wrong decison for myself and then regret it 10 yrs from now when im hurting again.....ya know what i mean? Either way, feel free to email me personally if you'd like to continue to chat, or post a comment if you'd like. I love this site and im always on it! Kiss Hope all is well!

  • GeekyGranny
    Jan. 10, 2008

    I have a member in my fibromyalgia support group here who had one implanted.  She said the trials were great but after the surgery, she didn't feel that much improvement.

     

    Problems with it are the surveilance cameras in stores like Walmart and Costco (around XMas time).  They seem to make the inserts extremely painful.  And she said there...

    RHMLucky777

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    I have a member in my fibromyalgia support group here who had one implanted.  She said the trials were great but after the surgery, she didn't feel that much improvement.

     

    Problems with it are the surveilance cameras in stores like Walmart and Costco (around XMas time).  They seem to make the inserts extremely painful.  And she said there was no way to control it but leave the store.

     

    I had one doctor tell me I would benefit from it.  But after hearing her story, I don't think I would go for it.  Her insurance paid for it and it cost $53,000!  

     

    I'm thinking about asking my pain doc about deadening my nerves in my lower back.  I cannot bend and do something without my back going into spasms.

     

    Only problem I have now is I have no income and no insurance.  Thankfully most of my doctors have cut their office fees in half and my pain doctor does discount some of his procedures.

     

    I have a TENS unit that I use when the pain gets bad and it was cheap.  It fulfills my need for now.

     

    That may be an option for you.  You can go online to Amazon and find them pretty cheap.  And they work GREAT!!

    • sherry
      Jan. 10, 2008

      Thanks for the input. I was told that the one they would be implanting had a controller that I could turn on/off. They recommended that I turn it off before going through any theft detection devices. So far the info i have found on different web sites has been about 95% positive. Right now my choices are a neurostimulator or a back fusion. If I had the back...

      RHMLucky777

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      Thanks for the input. I was told that the one they would be implanting had a controller that I could turn on/off. They recommended that I turn it off before going through any theft detection devices. So far the info i have found on different web sites has been about 95% positive. Right now my choices are a neurostimulator or a back fusion. If I had the back fusion I would not be able to do the job I'm at right now. I am an ICU nurse and love my job, but I am feeling pressured to find a different job. I'm hoping to find something in nursing but no lifting. Hope things get better for you and your friend.

    • GeekyGranny
      Jan. 10, 2008

      Hi Sherry!

       

      My friend also has a controller.  It didn't matter that she turned it off.  The surveilance devices directly affected the implant.

       

      Have you thought about have your disc replaced?  Spinal fusions have so much more problematic later on.  I have several discs in my back that are bulging.  I went through IDD Therapy...

      RHMLucky777

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      Hi Sherry!

       

      My friend also has a controller.  It didn't matter that she turned it off.  The surveilance devices directly affected the implant.

       

      Have you thought about have your disc replaced?  Spinal fusions have so much more problematic later on.  I have several discs in my back that are bulging.  I went through IDD Therapy which essentially stretches your back along with heating and massaging your back to regenerate your discs.  It was awesome!!! 

       

      I've heard more negative than positive things about fusions and there are so many more options out there.

    • sherry
      Jan. 10, 2008
      I agree about back fusions--I would like to avoid it if possible. My father and a friend of mine both had a fusion by the same surgeon and are both doing well and working full time. My father does construction and drives a backhoe and says he has no pain. He is the exception. I know that most fusions don't work out that well. I have an appointment in March...
      RHMLucky777
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      I agree about back fusions--I would like to avoid it if possible. My father and a friend of mine both had a fusion by the same surgeon and are both doing well and working full time. My father does construction and drives a backhoe and says he has no pain. He is the exception. I know that most fusions don't work out that well. I have an appointment in March with the pain specialist to discuss the neurostimulator. I don't have to make a decision for a few months. I've been just trying to gather info and talk to people who have had one on these. The pain specialist said that they would arrange for me to talk to a couple people who have one so that I can ask them questions. Thanks for writing back.
    • Sally
      Jun. 27, 2010

      I too worked in the medical field I was in dialysis and hurt my back on the job almost 4 years ago now and have been out of work the last 2 years i had my back fusion surgery last year but it did not help the pain.  The pain management doctor told me after the surgery that the fusion would only help the anatomical position of my back and not necessarily...

      RHMLucky777

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      I too worked in the medical field I was in dialysis and hurt my back on the job almost 4 years ago now and have been out of work the last 2 years i had my back fusion surgery last year but it did not help the pain.  The pain management doctor told me after the surgery that the fusion would only help the anatomical position of my back and not necessarily help the pain well I still have all the pain that I had before the surgery and radiating pain in the backs of my legs and tingle and numbness of feet and toes.  I have used the Tens unit for several months now and it helps some but now they want to implant the neurostimulator to see if that will help me more? I don't know if it will or not but the doctor said that I would not be able to go back to work and right now he says I can't even work as a secretary.  So not only did I lose my job and benefits which I do have work comp but I have no outlook to be able to work again and I am only 39 which sucks to have to go on disability but I am hopeful that the neurostimulator will work I am not sure what the procedure is but i go in 2 weeks to start the trial before they do the actual surgery? I have heard good things and bad things about it but I hope things go well for you and you may look into the artificial disc replacement and ask your doctor about that. Work comp wouldn't pay for it for me but they say most insurance companies will pay for it and it is cheaper than the fusion. So check into that before you make your final decision. Good Luck.

    • sherry
      Jun. 28, 2010

      Hi Sally. I haven't visited this site for awhile, but I was interested in your input. It sounds like you've already been through quite a bit. At the age of only 39, that really stinks. I get so frustrated when I walk around like an 80 yr old. It seems that my leg pain has gotten a little better (or I've just gotten used to it), but my low back pain seems to...

      RHMLucky777

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      Hi Sally. I haven't visited this site for awhile, but I was interested in your input. It sounds like you've already been through quite a bit. At the age of only 39, that really stinks. I get so frustrated when I walk around like an 80 yr old. It seems that my leg pain has gotten a little better (or I've just gotten used to it), but my low back pain seems to be somewhawt worse. I also have been dealing with upper back/shoulder pain. I have scoliosis and wore a back brace for 3.5 yrs when I was a teen. I had to laugh when recently I heard a report that bracing in teens for scoliosis has been proven to be of little benefit. I also heard another report recently that even though the incidense of back surguries has increased, there hasn't been any increase in the prognosis. It seems that with back injuries/pain it is a lose-lose situation. I am getting so tired of going to the doctor and having nothing positive to leave with. No, I am not depressed, but just frustrated. When I started looking into the nerve stimulators I thought maybe it could help. The doctor is very focused on one area, my left hip & leg nerve pain, but like I said I have involvement in my upper back & shoulder. With the scoliosis I have issues with my whole spine. I have talked to some people who have had the stimulator and they really like it. I'm not sure what your specific areas of pain are or what exactly your spine deficets are, but I hope that the trial shows some benefits. As for your career, have you considered furthing your education. There are so many classes that can be done online. Are you an LPN/RN? I have my BSN and have worked for 17 yrs. I really love my job and I cringe at the thought of returning to school. I'm 43 yrs old and have only had computer training on the job. I'm afraid I would really struggle with going back to school. You had said your doctor said you couldn't even work as a secretary. I would have a very difficult time sitting for long periods. I do best with working only 8 hr shifts & being able to move around with as little lifting as possible. I truely hope that you get relief from the nerve stim trial. Please keep us updated. Take care.

       

    • AWALLL
      May. 29, 2012

      Never Heard That Before? I Have One ANd It Really Helps My Nerve Pain! I Don't See How Anything In A Store Could Affect It!! The Only Thing Would Be Major To Affect It Would Be An MRI And Ya Can't Get That Done! Mine Turns On And Off With A Magnet If The Controller Broke.  Just Interesting! I Did ALOT Of Research Before I Decided To get Mine And It Really...

      RHMLucky777

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      Never Heard That Before? I Have One ANd It Really Helps My Nerve Pain! I Don't See How Anything In A Store Could Affect It!! The Only Thing Would Be Major To Affect It Would Be An MRI And Ya Can't Get That Done! Mine Turns On And Off With A Magnet If The Controller Broke.  Just Interesting! I Did ALOT Of Research Before I Decided To get Mine And It Really Helps My Nerve Pains I Am Haveing! I Had An Total Hip Replacement And Back Problems And Somethings Going Really Wrong With My Replacement Or Something? But For My Nerve Pains That I Have Had Shoooting In My Back And Legs Are Gone So I Am Loveing Mine.

       

  • Vickie Kunkel
    Jan. 08, 2008
    I'm a newbie also to this site.  I would suggest you obtain a second opinion prior to committing to it.  It was suggested that I have one implanted, but after my second opinion, it was explained that due to my circumstances, it would most likely fail.  I opted for an internal pain pump and am currently working with my doctors to obtain the...
    RHMLucky777
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    I'm a newbie also to this site.  I would suggest you obtain a second opinion prior to committing to it.  It was suggested that I have one implanted, but after my second opinion, it was explained that due to my circumstances, it would most likely fail.  I opted for an internal pain pump and am currently working with my doctors to obtain the proper level for comfort and get me off of the pain meds.  Whatever you choose, just be advised and aware of your options and probable outcomes.Blush
    • sherry
      Jan. 09, 2008
      Thanks for the input and I already was planning on talking to at least one more Dr. before I committed. What I really want is input from someone who has a neurostimulator. I would like to know if it helped them or not.
    • Anonymous
      Debby
      Apr. 18, 2012

      Hi Sherry, I had the neurostimulator put in in Jan 2012. I would like to get off of most of the medications. I am afraid of the damage to my liver and kidneys. So far the stimulator is working pretty good. I am still on meds and try to reduce them but when I do the pain comes back somewhat. The other day I forgot to turn the stimulator up after getting up in...

      RHMLucky777

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      Hi Sherry, I had the neurostimulator put in in Jan 2012. I would like to get off of most of the medications. I am afraid of the damage to my liver and kidneys. So far the stimulator is working pretty good. I am still on meds and try to reduce them but when I do the pain comes back somewhat. The other day I forgot to turn the stimulator up after getting up in the morning and before long I had a vivid reminder of how bad the pain really is. So, yes it is helping to a great extent. I still take meds but I can get different programs in the unit that may help. I only have 2 programs right now. I will be 60 this year and I want to do my yard work, ride my horse and enjoy life again. Good luck with whatever choice you make. Debby

       

       

       

       

       

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