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injuries from spinal cord stimulators

susaninpainssusaninpain Posts: 2
edited 06/11/2012 - 8:58 AM in Spinal Cord Stimulation
Has anyone suffered from paralysis or nerve damage as a result from Trial Spinal Cord Stimulators? I woke up after having one implanted in severe pain and no longer able to walk. I spent a week in the hospital and 2.5 months in a nursing home. (The SCS Implant was removed in the hospital). Doctors told me they could not say if I would ever walk again. It has taken me 10 months and a lot of physical therapy but I can now walk with the aid of a walker. I am still suffering with major pain issues due to the nerve damage. I still am unable to sleep in a bed. I have to sleep sitting in a recliner. While I was in the nursing home the Doctors there hooked me on Oxycodine. They gave me such large doses I was hallucinating and would pass out. I have been able to reduce my dosage to a much more resonable amount, however my goal is to withdraw off of it altogether. But I cannot seem to find a non-narcotic able to control the pain at a tolerable level. I would like to hear from anyone who has suffered a similar injury as a result of these spinal cord stimulators.
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Comments

  • Oxycodine come in an iv? I thought oxycodine only comes in a pill, I never heard of anyone being injured as you describe from a scs trial. And i had 2 trials already,

    I am not sure how they can damage a nerve just by a simple scs trial, From surgery yes , but never heard it hapening to anyone from scs trial.

    Its a prety simple procedure and if it dont help the pain they just pull the leads right out,

    If the cause of nerve damage is from a scs trial then the dr had to be real bad, i have heard the posibility of infection can hapen that could cause some coplicarions with some people, Is that what hapened in your case?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Hooked as in addicted too. Not hooked up to an IV. They gave me the oxycodine in pill form. NO, this was not from an infection. What happened to me is a result of the leads damaging the nerves along the spinal canal.
  • test lead implant manual said:
    Warning: As with any spinal procedure, the risk of serious injury to the
    patient (eg, hemorrhage, hematoma, or paralysis) increases as location
    of the selected needle insertion site progresses up the vertebral column
    — from a lower risk at a lumbar location to a higher risk at a cervical
    location. Select a vertebral location that provides the widest and easiest
    access to the epidural space during needle insertion to reduce the risk
    of serious patient injury resulting from direct trauma to the spinal cord.
    As you can see, it is one of the risks of the procedure. I'm sorry that this has happened to you and I wish you continued success in regaining the use of your legs.

    I've not heard of anyone having this sort of issue from trial lead implant, and knock on wood I did not suffer any ill effects from my trial lead implant or the permanent implant.

    As far as pain control, that is something you will have to diligently work on with your doc or pain management specialist. There are other alternatives to control pain, some obviously more effective and safer than others.

    Sorry I can't be of more help.

    "C"
  • Oh ok got it, Sorry i missunderstud the hooked part. They got you hooked on oxycodine, How long were you on it to be hooked on it?

    I been taking norco for probably almost 20 years now changing it up once in a while to something else so its keeps working, I dont think i am hooked on it even after 20 years, At least i dont think so, Maybe i should stop taking it for a week just to see if i end up holding up a gas station or something eh?

    Sorry the scs caused you so much problems, So what hapenes to you now for pain control?

    Best wishes,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Oh great thanks for the warning, i could of done without knowing that C.

    My pain dr talking about doing another trial with the flat leads, sometimes i rather not know the risk, I rather go in there dumb and stupid and come out pain free, wishfull thinking,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I have a friend on another forum who was injured during the trial for the scs unit as well. The leads were shoved around the canal and caused serious damage to the cord in the thoracic area, leaving her with permanent damage. Her trial however was done by an anesthesiologist/pm doctor, rather than her PM doctors and he never showed up afterward to even tell her what happened.
    She is still struggling today, almost two years later. She also was paralyzed in the incident, damage to her bladder, bowels, etc...
    It is one of the reasons that I will not go through the trial at this point during my life. Maybe later, in the future when my pain management options are dwindling but for now, I will keep doing what I do now.
    I wish the OP the best of luck in regaining her use of her legs and any other damage that was done. What about the use of nerve pain medications instead of oxycontin? Those type of meds are usually far more effective in treating neuro pain than opiates.
    Sandi
  • ive been looking on the net for days now to see if anyone was having the same problems i was after having the trial stimulator removed,after i got the leads pulled out i have new pain,its a sharp pain,it goes from the incision site and radiates down the middle of my back,i never had this before,i also suffered from major muscle spasms while i had it in,hence the reason i didnt get the permanent one.no sign of infection either,just dont know what would cause the pain,sorry you having such a hard time,i hope u get better soon.


    btw i have ddd,a laminectomy lower back sever nerve damage,failed back syndrome
  • HI Joyce,
    Have you had any MRI's or CT scans done since the trial to make sure that there is no damage or compression?
    If I were you, that's the first thing that I would do is talk to my PM doctor or surgeon and if they won't order the tests, talk to your general practioner and have those done to confirm that there is no permanent damage.
    Taking out the temporary leads sounds so simple- we just pull them out, but if there is compression in the canal, or spondylolysthesis or bulging discs or herniations, yanking out those leads can cause more damage if not done carefully when the trial leads are removed.
    Best wishes to you,
    Sandi
  • Received perm SCS But removed A MUST READ
    On 2/12/2013 I received the permanent SCS outpatient surgery. Complications for 1 month included hematoma under right backside under rib area where battery implant was installed. The leads were installed in thoracic area and they were not installed correctly and did moved. SCS did not work. A month later I went in for a redo and on 3/26.2013 I a waken in the recovery screaming and crying from the pain. I can take all the pain that’s thrown at me but not this time. Nurses were giving me Dilaudid Iv injections and nothing worked. They tried everything. So me laying there moaning up and screaming a storm. They decided to call my wife in to recovery room and for her to bring in the WIFI remote. They were planning to try out the stimulator to see if it would stop the pain/CONTROL. Well earlier when I was in surgery the Boston Scientific territory regional manager requested my wife to give him my SCS wifi remote so he can reprogram it for when I went home it would be ready to use. Anyways back to when nurses asked my wife for remote. When my wife walked into the recovery room. She saw me in the worst pain I ever have been in. Remember I already had this surgery a month before. The nurses then received the SCS remote and proceeded over to the foot of my bed. One on the nurses then turned on the power. Damn thing was powered on high. The worst pain ever when the SCS is on high and all your muscles/nerves have a shooting pain from mid chest/back all the way down to my toes. Bad thing was that the nurses were screaming at me on how to shut it off. Yes they did not know how to use the SCS. I practically was dead already after a god forsaken minute (BP/TEMP/Pulse Skyrocketed). Bad thing was my wife and mother in law watched the whole thing. Half dead the doctor finally came in and leaned over and asked “I hear you are going to sue? I replied what the F%$# are you talking about”. I then tried to explain to the doctor what happened. Then one of the nurses yelled at me not to worry about the past and to worry about the future. Doctor then said since I can’t talk pain he is going to admit me into the hosp. Worst night in my life that night in hosp. Next day they released me without doctor coming in to check on me. I had the next night screaming due to pain. I was still taking morphine sulfate er 30mg every 6hrs, Dilaudid 4 mg every 2hours, and oxycotin every 8hrs. The fallowing day after screaming all night and 3 day. I then called BASIC (look it up) and talked to head RN. I explained somethings wrong. She replied that I needed to shit. Bit#$! She then said if I insisted that I’m in pain. For me to go to any ER. I went to Chapman memorial hosp er where I had the surgery done. As soon as I walked into the ER they gave me 1000mg of Demerol and volume. Did not work and I stayed in the ER for another 10.5 hrs. Was finally admitted into hosp and I requested for this damn SCS to be removed. In morning I had the surgery. Turned out that both of the 2 SCS malfunctioned and doctor also wrote that I had a very bad shock from the SCS in recovery room(I have doctors surgery DOCUMENTED report). Cant poop and takes a long time to for me to start peeing. In more pain and I only had Lumbar problems. Now I’m in pain in the Thoracic area where the SCS was installed twice and then removed. WORST thing is that I could not find a malpractice attorney and a medical device malfunction attorney . Was told I only had 1 year to file lawsuit or was this a lie. HELP SOMEONE!
  • I am going to try to comment but I will probably run into snags. Please bear with me as at least give you encouragement of what you have been through. I am also surprised no one else commented on this post as it has been since Dec of last year since you have written. After I had the permanent implant, I did not have ill effects and excruciating pain like you had. Basically, it was done by a good neurosurgeon which helped a lot. I too, have been in chronic pain for well over 20 years with different kind of pain meds. Some were a little better than others but did not help very much. You say that you have no success with the pain meds that were given to you. The best pain med I had was also Demerol, 100mg every 4 hours. It did work and it was great until it wore off after 2-3 hours. I was also able to sleep a little. Yes, that is addictive because you want more for the pain. You on the other-hand was given 1000mg of Demerol and you would think that it would not only relieve your pain but put you out for quite sometime. That would have been sheer pleasure for you. But, if it worked, you would probably wake up in more pain. What I am having a problem with is that how the doctors and staff were treating you. It looked like it to me that they had a hard time dealing with you and probably wanted you discharged right away due to the screaming you did and more than likely scaring other patients. Why would they want that in their hospital? It is unreal with the things that they do. I had bad experiences in certain hospitals as well. I know Chapman College but not their medical center or even if they are related. I gather that you talked to the head nurse over the phone as she said you have to take a dump. What is that all about? After spending a good 12 hours in the ER, with the Demerol and such which didn't seem to work, I imagine by taking out the stimulator itself wasn't the problem but the electrodes that was inserted into your spine. The way you are subscribing this is that there was a catastrophic problem with either the electrodes or maybe something causing it to get stuck. It's no wonder you went into shock. Did your doctor implant the SCS in your spine correctly? Since you have all the documentation, you should have all pertinent information for a lawyer. What about the notes being correct? Surprisingly to me is that no attorney would accept you as a client. I would think if they will win in a malpractice suit, it would be on a contingency basis. One of the biggest problems is that hospitals hire the best lawyers for their defense and unfortunately they do win from time to time. It's also possible that lawyers who you bring your case to, don't want to go up against large hospitals. Maybe they are not experienced enough. To seek the best attorneys like in Beverly Hills, Newport Beach and other affluent areas would not consider a case as yours because if some reason they lose, guess who will pay? These lawyers make tons of money and generally take on very affluent people. Money is generally up front and I bet their is very little or no contingency at all. I don't know your case so I cannot rightly give you any opinion. As such, since I am not a lawyer, I could never tell you what you should do. One thing I cannot believe is that you have only one year to file. Personally, I don't think so. I don't know what CA law is but I would be pretty sure that you have longer than that. This doesn't even give you time to do a thorough research.

    I do hear you and feel what you are going through. I wish I can raise a magic wand and say everything will be OK. Although I have bad to worse chronic pain for years on end and my differs from yours. We can never experience one's pain against another so it is extremely difficult to elaborate on that. What I can do is to empathize with you and wish you all the best for yourself. I was always told that there is a solution to everything, only if you go to great lengths to achieve it. If there is a will, there is a way. Best of everything to you and if you believe in God, even that helps. I hope what I said will give you encouragement.
    ezymel
  • ezymeleezymel Posts: 11
    edited 04/14/2015 - 9:25 PM
    I had a trial of a nerve stimulator implant and it seemed that it was working OK so I opted for the permanent one. Before that happened, I was being cared by a pain doctor, also a anesthesiologist and the first thing that was done was to have an full MRI of my spine. The results did not look very good. I saw it myself and the doctor was carefully explaining to me that I have disk disease, spinal cord being clamped by ligaments putting pressure on the nerves causing pain in my legs and lower back. When I stand, my legs get numb and tingles like it was getting up from being asleep. Several years back I had 1 lower back surgery of the L4-L5 in the lumbar region and another surgery later on my neck, C3-C4 cervical and a metal plate was put in to fuse the vertebrae. The recovery of the neck was hard and had to wear a restraint so I could not twist my neck. The lower back surgery was to repair some disks and stop the friction of bone to bone. Recovery was not as bad but I had to wear a back brace and use a walker for both surgeries. Prior to that, I was under care of a rheumatologist for two years having pain from fibromyalgia and chronic fatigue. She started treating me for this but my sed rate was so high, she was concerned. I had a lot of blood work done ruling out rheumatoid arthritis but she put me on prednesone for a year and gave me trigger point injections which helped for a couple of hours and when it wore off, the pain came back. About a year or so, it did bring my sed rate down and also the inflammation of my muscles. The pain was still there. Now I am being told I probably have scioretic arthritis which is an auto-immune disease. She put me on methotextrate in pill form and made me sick. She took me off of it. That is a pretty potent drug sometimes used in chemotherapy. Now she wanted to put me on Embril and have to shoot myself every two weeks. A embrel kit was thrown at me and told me to read the instructions on how to do it. When I found out how much it would cost me out of pocket each month, I couldn't afford it. She then wrote a script for Humira which is also by injection and the cost was even higher so I couldn't go for that either. I tried to have the drug companies to help me but they refused as I made too much money. Finally my doc prescribed IV therapy and the price was extrordinary. I told the RN at the cancer center where that was given, and asked her to lower the payments. I had insurance but they would only pay a small portion of it and leave me a few thousand dollars to pay out of my own pocket. I was told that I had to fork up around $2,000 up front before the treatment. Not only that but that was just the beginning. Every month I had to have this treatment for at least 2 years and even longer. Forget about it. By the way all these drugs are used in some cancers and methotextrate is also in it. Once I told my doctor that I couldn't afford it, she had nothing else to do with me. Good bye doctor! Doctors generally don't think of the cost but they prescribe it anyway. There is no such thing as generics for these kinds of drugs. The pain was starting in my legs and I saw a neurologist and gave me nerve conduction studies and EEG. The studies showed that I have nerve problems in my legs called peripheral neuropathy. He also wanted me to have an MRI and that found that I had disk problems which included degenerative disease. That is when I had my back surgeries. Actually I had one more surgery to remove scar tissue. I made a move to another State where I continued my horrific journey with more neurologists and a pain specialist. Before I went to the pain specialist, I had repetitive EEG's and NCS. Number 1 I didn't like because he also prescribed an expensive drug which I couldn't afford and have to take it for two years. Once I told him that, he wouldn't see me again because I refused his treatment. Screw him. I didn't like him anyway. By the way he said I also have an autoimmune disease and it had some name but I don't remember it. I think he said that I have peripheral neuropathy and nerve damage. I went to another neurologist and did all the same tests again. He said that I have CIDP and the DP stands for demylating polyneurology which sounded bad and it was as the sheath that protects the nerves were coming off exposing the nerves itself. He prescribed IVIG which is gamma gobulin. Now talk about expensive. I had to take it for 5 days in a row and each month thereafter. My cost would be a thousand dollars a day for the first five days. Forgit about that too. He refused to treat me. I didn't like him either. This pain was going on forever and now I was starting to lose my balance and walked awkwardly. These were all due to the nerves being subject to being exposed.

    I don't know when this post will ever end. lol

    Right before I had the nerve stimulator put in, I was seeing a pain specialist who I liked very much. You see, there are some doctors I liked. He said he wanted to do a spinal injection with steroids and was done as an outpatient. The best part was, I was sedated. It cost a lot but insurance paid all of it except my share which wasn't very much. It worked for a few days then it didn't help anymore. He scheduled me for another and he said that sometimes it works and sometimes not. The second one was also as an outpatient and once again it worked for a few days. If this injection is not done right, you can be paralyized or could kill you. I trusted him and he was hoping it would work andif it did, I would have it done every 3 months. For the pain to be gone, it was worth it. He wasn't going to give me another one so once again I had to go for MRI and CT scan of my back and it showed nerve damage and pressure by the ligaments that secure the nerves but was putting undue pressure on it. There was a new procedure in that it would be a less invasive surgery by putting a catheter in and a small micro device to desensitive the nerves so as to release the pain. Insurance wouldn't pay for it as they said it was experimental. So, be it for that. Then, he had another idea and that was another type of invasive surgery where a catheter is put into the spine and cut the ligaments trapping the nerves. Again, insurance wouldn't pay for it and they didn't tell me why. My doctor couldn't believe it because it has been quite successful. Then there was one more thing and that was to put in the trial stimulator and had no problems with it and it seemed to work on my legs. The doctor also told me that don't be that it probably won't take care of my lower back. He was right and decided to go for the real thing. He couldn't do it himself and referred me to a neurosurgeon. I had an appointment and was in the treatment room and the doctor was there before I even stepped in. That's unusual because the doctor enters later. He was sitting at a desk and had all of my MRI's spread out and not looking at me, he said that he is going to set up a surgery for a fusion in my neck area. Why? He didn't answer me and said it has to be done. His assistant was already setting it up and I had to be in the hospital for at least 3 days or more. I told him I only wanted the nerve stimulator and refused to do it. No explanation whatsoever. I knew that the surgery was risky at my age and even when I was younger, it was still risky bit not as much. He said I will be in ICU for a day as well. I told my other doctor about this and he couldn't understand why. By the way I didn't like this surgeon as well. My pain doc then made an appointment for me to see another neurosurgeon and said he will do it. He was in the same office as the 1st one but had independent practice. This new surgeon I liked and I was told whatever I want he will do. Quite a different approach. This time the stimulator had to be put in as an out patient but in a hospital as if anything went wrong, I would be immediately admitted. Guess what? Both the trial and permanent placement only took a few hours including recovery. Guess what also? Both cost $100,000 each which is mind boggling but insurance paid all of it except my share which was only $150.00.

    Now you are wondering where I stand now. I have lots of chronic pain all over my body, especially the neck, shoulder and lower back areas. It only works on my legs but always have to adjust it when I drive or sleep. Whenever I move my body to a different position, I get surges and have to either lower it or increase it. I t does not work for my back. The doctor didnt promise me a rose garden. Oh, one more thing and maybe you can laugh at this. It does stimulate my testicles and scrotum area which feel good but that's it. So, here is my story. I still have lots of pain everywhere, wear a CPAP, have RLS, fall down at times, and fall out of bed at times. I have been detected that I have various diseases including my nerves and where do I go from here? I really don't know. I also have heart disease as well. I am 76 years old and is it worth pursuing anything more? How much longer will I live, I really don't know. I know my health is getting worse. There it is and I am not going to preview it as it will take a long time. Read this at your own discretion.
    ezymel
  • Hello,

    I have been scouring the web trying to find something that could help me with my dilemma. Thankfully I found these forums.

    I have the Eon Mini rechargeable SNS surgery on June 5th. The back leads were remarkable and have helped me immensely. The only drawback that I had in the beginning was I would feel a little nauseated while recharging. And i was told that and I was "allergic" to the glue that they used because my incision sites were extremely red and slow to heal.

    About a week ago, I started having slight pain in my lower left abdomen. I have had a hernia repair there, so I thought maybe it was that, because the incision & pocket for my battery is also on my left side. Now I am an overweight female, and the pocket incision was quite painful with recovery. Walking up steps, sitting or lying in certain positions was excruciating. That was to be expected. If you picture a few tennis balls (weighted) being held together by a net, and some of the "strings" of that net are cut, the tennis balls would shift. Common sense. This pain got stronger to where I thought maybe it was menstrual cramps.......but more severe than usual.

    Each day has continued to get worse. Three days ago, I began having sharp, stabbing pains around my battery site. Touching it, I found that it had completely shifted onto it's side! I felt like Sigourney Weaver in the movie "Alien" because I could literally see the battery protruding through my skin.
    I called my rep from St. Jude and he said to call the surgeon. I also mentioned about the nauseousness when recharging and he scoffed saying, "That's a new one". So I feel he was extremely dismissive. I got in touch with my surgeon's office (Pain Management clinic) and they got me in first thing the next morning.

    I did not see my Dr., but his PA. They took x-rays and made an appointment for me to come back two days later and gave me some immediate release morphine for the pain. He did agree that it was tipped forward and twisted........but that was it. This was yesterday. I honestly have felt
    like going to the ER at least 4-5x each day. But I refrain because I doubt there is anything they can do!!

    The pain is now escalated to my diaphragm. I discovered this when yelling at my kids last night! I have been sitting for days with ice on my site and in a binder around my torso. It helps somewhat, but also makes the battery feel like it's pushing up against my stomach Confused I have pain around the back of my left rib cage to just below my sternum......and this is when sitting still. Going upstairs and moving my bowels is very uncomfortable and I just keep popping the pills. Which ironically, is the actual reason why I went for this surgery. .... to get OFF of all of these pain meds!

    I've read about battery migration and leakage, but can't find where it lists the symptoms. Is this something that it could be? If so, how do they fix it? And has anybody else experienced something like this or up to offering any advice???
    Thanks in advance & wishing you all well and good luck!
    Stephanie
  • Stephanie7777SStephanie7777 Posts: 5
    edited 10/08/2015 - 9:53 PM
    Hello,

    I have been scouring the web trying to find something that could help me with my dilemma. Thankfully I found these forums.

    I have the Eon Mini rechargeable SNS surgery on June 5th. The back leads were remarkable and have helped me immensely. The only drawback that I had in the beginning was I would feel a little nauseated while recharging. And i was told that and I was "allergic" to the glue that they used because my incision sites were extremely red and slow to heal.

    About a week ago, I started having slight pain in my lower left abdomen. I have had a hernia repair there, so I thought maybe it was that, because the incision & pocket for my battery is also on my left side. Now I am an overweight female, and the pocket incision was quite painful with recovery. Walking up steps, sitting or lying in certain positions was excruciating. That was to be expected. If you picture a few tennis balls (weighted) being held together by a net, and some of the "strings" of that net are cut, the tennis balls would shift. Common sense. This pain got stronger to where I thought maybe it was menstrual cramps.......but more severe than usual.

    Each day has continued to get worse. Three days ago, I began having sharp, stabbing pains around my battery site. Touching it, I found that it had completely shifted onto it's side! I felt like Sigourney Weaver in the movie "Alien" because I could literally see the battery protruding through my skin.
    I called my rep from St. Jude and he said to call the surgeon. I also mentioned about the nauseousness when recharging and he scoffed saying, "That's a new one". So I feel he was extremely dismissive. I got in touch with my surgeon's office (Pain Management clinic) and they got me in first thing the next morning.

    I did not see my Dr., but his PA. They took x-rays and made an appointment for me to come back two days later and gave me some immediate release morphine for the pain. He did agree that it was tipped forward and twisted........but that was it. This was yesterday. I honestly have felt
    like going to the ER at least 4-5x each day. But I refrain because I doubt there is anything they can do!!

    The pain is now escalated to my diaphragm. I discovered this when yelling at my kids last night! I have been sitting for days with ice on my site and in a binder around my torso. It helps somewhat, but also makes the battery feel like it's pushing up against my stomach Confused I have pain around the back of my left rib cage to just below my sternum......and this is when sitting still. Going upstairs and moving my bowels is very uncomfortable and I just keep popping the pills. Which ironically, is the actual reason why I went for this surgery. .... to get OFF of all of these pain meds!

    I've read about battery migration and leakage, but can't find where it lists the symptoms. Is this something that it could be? If so, how do they fix it? And has anybody else experienced something like this or up to offering any advice???
    Thanks in advance & wishing you all well and good luck!
    Stephanie

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  • I just got the perm. SCS implanted on Sept. 10th. and have had so much pain. My problem is the spinal canal is too narrow.. I found that out when I went in for the trial. I had a MRI just before the second surgery and the surgeon said there was plenty of room.. I told him what the other doctor said and he wouldn't listen to me.
    Needless to say, I found out the next day in the hospital (was admitted cause of extreme pain) that he had trouble placing the leads DUE TO no real space to put them... So he forced them in and ended up making a longer cut into my back.
    Today marks 4 weeks post op and I'm still in pain... Nerve pain and a burning pain that is in my spinal canal. I have an appointment with the surgeon next week and will be telling him to schedule a surgery to remove the SCS. I've been told by 2 doctors and 1 nurse that I shouldn't be having that type of pain. 1 of the doctor's said since they forced the leads in, there may be perm. nerve damage and they still need to figure out what is causing the pain in the canal. I've had the Stim on 5 times.. each time the pain in the upper back and nerves gets worse. This last time, the pain is so bad that I can hardly walk, sit, stand, lay down or do anything.
    I was told by some who have the SCS that it works for some and not for others. They all also agreed that since there wasn't any spare room in my spinal canal, this shouldn't of been done. Now there is a chance that when I do get this removed, it's a 50/50 chance for perm. nerve damage...
    So anyone who has this suggested to them, PLEASE read up on everything including reviews. Mine is by Medtronic's.
  • After reading these posts not for me. My PM wants to try the trial. Forget it. I am gratefully that people do mention their experience. Helps in making decision.
    Vicki
  • dilaurodilauro ConnecticutPosts: 9,582
    will provide their input based on their personal experiences. Most of the time, when something is negative you will hear it more often and louder.

    I just would not want you to make a medical decision based on the comments your read here. Remember, we are not medical professionals. You need to discuss all the pro's and con's with your doctor when it comes to this procedure (SCS) or any other procedure.

    You specific condition may be perfect for what they doctors are recommending. No one on this site can read into your body to really understand what you need.

    Yes, listen to what people have to say. It is a good basis for questions towards your doctor. Just dont make a medical decision based on comments made on this forum.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thanks Ron I have been doing the research. I do wish I could hear the success stories, I'm sure there is plenty. My problem that as you know you have to keep trying different procedures, etc but I am starting to take a step back, breathe and wait. With my situation of IGG defiecent or hypogammagobulimannenia it make things alittle different when you have to have something implanted. It's even risky for all the different injections and RFA . I would give anything not to have to be on narcotics since that also creates GI issues and once gastros see the drugs without looker deeper they blame on opiate use. Well I'm getting off track and I'm frustrated right now hence the accupuncture route.
    Vicki
  • Grammaof9....

    I had no problem with the trial at all... I had no pain in my lower back or tailbone and the pain that went down my right leg was gone too.... The trial was put in from the lower back going up... It's the perm. one that is causing the problems... The surgeon should have listened when told I had no room in my spinal canal.. I told him and the first doctor who did the trial said it too and it was in my trial report. Problem is... the second surgeon forced the leads in and before that, he had to make the cut longer than needed and he went from the top down.
    My Uncle just got his trial out earlier this week and he said it helped with his back pain. Now he's gotta make up his mind if he wants the perm. one or not. Plus, he's 80 years old...
    I know of a few people on a Workers Comp forum that have the SCS. One of them have had it for almost 9 years... same with his wife. They have no problem with theirs. They've both said their's needed adjusting a few years later, but that's what I was told too.. I did my research, asked questions and since the trial really helped, I figured the perm would too... Like I stated before, it works for some people but not others.. I fell into the not others..... And I too am tired of the pain pills. Just to get through the pain, I take 1 Tylenol with Codiene during the day, then 2 Oxycodones and a Tizanidine at night with a sleeping pill.... And still don't sleep cause it's just taking a bit of the edge off. My body is just too use to pain meds....
  • Sorry CLB, I know if the trial doesn't cut pain by 50 percent you are not a candidate . My 85 year old mother has severe spinal stenosis and was told that's all they can try for her and she thought a simple fix. I try to explain the pros and cons for her but I will not tell her to try it that decision is hers. She wanted to know why I'm not going to try and I told her so far with my research I am not convinced yet. She doesn't have Internet and doesn't want to read the info. I just had the RFA in August so my body needs a rest from all the treatment in the last 3 months that I have received. So I will continue to read but it seems with myself I have sensitivity to do much as it is. I think I have already built up a tolerance to Opana which I started end of May. What a ride this has been. Never thought that I would ever have had so many issues. Sometimes the only thing I can say is (it could be worse) and I know it can. I have 4 mg of Zanaflex and it works in reverse for me hyped me up instead of relaxes.
    Vicki
  • I had my L4-5 fusion surgery 12/30/13. I have YET to be released to go back to work. I spent 5 days in the hospital, alternating between morphine (does nothing for me) and Norco. They finally just sent me home. The surgeon saw me once since then. So, back to my PCP for pain mgmt. She quit and moved out of state in August. I went to a pain mgmt Dr, which I am NOT an advocate of this type of treatment! He talked me into a steroid injection, which I said I have issues with steroids, go into the procedure with a 162/102 BP. My opinion is that he should NOT have proceeded. I have been set back about a yr pain wise! I was taking Percoset 10/325 plus Valuim 5 mg 3xdaily. The pain Dr changed to oxycotin 10mg 2xdaily. He also left, his replacement came in, said he doesn't like narcotics, gave me Diclofenac 50mg 2xdaily. He believes an anti inflammatory for my nerve pain is going to help?? The Oxy doesn't TOUCH the pain! I haven't been able to take a deep breath since the injection! Been told by another Neurosurgeon I NEVER should have had surgery in the first place. That doesn't help me now! Because I won't get a spinal cord stimulator, they mailed me my dics of the many MRIs I've had and dropped me as a patient! I have NO sense of balance, dizziness comes from nowhere, migraines are common now. Oh, and the weight gain! I'm going to a new PCP on Thurs, hopefully, back to the Percoset that at least helps with pain control. Another person mentioned the narrowing on the spinal column and the leads forced into place. My issue also, narrowing of the spinal canal, all discs below/above fusion of bulging and/or herniated or close to it. Anyone else who is in my shoes?? Help!! Don't WANT to live on drugs, but not is to have ZERO quality of life!! I'm now 51 and DID have a career, really want my life back!!
  • New here and can't find the "New Discussion" Tab to start my topic, so this is repetitive in a few discussions until then, but...my thoughts on the SCS devices are incredibly bad if you read on............. 

    I went for the outpatient trial of the subject device in this
    discussion board and suffered complete paralysis within 1 hour (trying to get
    relief from a pinched nerve). The wire lead at the T8 area somehow created a
    blood leak (epidural hematoma) that traveled from the T5 and pooled around the
    L3. After all the emergency issues that follow such a problem, I now have some
    feeling after 4 weeks and trying to learn how to walk using a walker with extreme difficulty with lots of help and do other things completely
    foreign to my body. What will return for body functions or even walking for me is unknown.

    My DR had a 25 year perfect record of no issues with the Medtronic trial stimulator.

    Has anyone heard of this problem and possible errors of the leads
    in a simulator trial? My wife and I have searched and cannot find a like
    problem. Would like to know of others is possible.

  • SavageSavage United StatesPosts: 4,634
    Hello jluke......
    I have no personal experience re your difficult SCS situation, but I do feel for you.

    I wanted to respond to your search for the ... New Discussion tab...
    It is on the right side of the page under the area of  tabs for...  The latest, top videos, top articles.

    The New Discussion bar.....is kind of silverish in color.

    Please feel free to private message me if you are still unable to find. 
    Thank you

    moderator, ~~savage

  • kia155kkia155 Hedgesville, , WVPosts: 4
    Yes.  Was not aware of any serious side effects untill finding all these blogs when I startrd having problems.  The first appt I had to talk with the pain group I was referred to by my neurologist(whom I trusted) was a rep and not a doctor?  Well I did not know enough. to be concerned about risk.  From the books and viseo they stated the same way other elective surgeries do "small chance but rare ocurrances cann happen" so a paper stating I understood was put in cront of me.  I sig ed also thi king I would get cahance for a doctor to talk with me before actuall appt.  Well that appt yurned out to be rep at bedside after prepped for procedure at which point I ask about the dangers and the worst stated was it didnt help or work later because of migration.  Dounded good.  But she mwntioned a website, which everyone knows what is stared there....rare occurances which almost never happen.  I think the whole bunch of these people know a lot more happenthan rare and the patient has right to nknow.  They all need a good lawsuit. To make them accoutable!  They can always say it was doctor lack of knowing.  Well train them before allowing them to touch another person!! Outraged!
  •  I can't help but to wonder if SCS is contraindicated for people with stenosis. I have central canal stenosis in T3-T10 thoracic spine where the leads are placed, and both central and foraminal in L2-3 and L3-4. From reading this thread with all the complications, it seems to be a greater risk for things going wrong because of insufficient space. 
    Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.
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