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spinal cord stimulator

theresacpttheresacp Posts: 18
edited 06/11/2012 - 7:59 AM in Pain Management
my pain management dr is now institing that i have a spinal cord stimulator put in and if i dont i would be considered a drug seeker i havent heard good things about thing things ren into a man picking up his prescription and he had one had one said it was real bad he built scare tuissue around the inplant and it was veery painful he had it removed and they couldnt get the ones up in his spine out becauce of scare tuissue on them so they cut them and left them where they were and he says that he has a lot of pain now has anyone out there had one of theses i would like to get some oppions on the spinal cord stimulaor from people that have had them
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Comments

  • You need to find a new PM Doctor right away! Only you and you alone can decide what is inplanted in your body!! Do not allow this PM bully you into having any implant! That is so unethecal(sp?). You should report hem to your state medical boars. Neither can he/she refuse to treat you unless you have another Doctor that will take over your care. That is also unethecal(sp?)and he/she can be reported to your state's medicalboard.

    I would NEVER allow this Doctor to implant a SCS in me! It is obvious they know nothing about a SCS. The SCS will not get you offpain meds If it reduces your pain by 50% it is considered a success. I have not read where anyone has had their pain reduced by 100%!!

    I am not bashing an SCS because they are great for pain relief. I am bashing your Doctor. People who have an SCS and it works for them love them. They do not work for everyone, it did not work for me but they DO work for most people.

    You can't have an MRI with an SCS implant. An MRI will do ugly things to the leads that are attachedto your spine.

    I guess everyone on here are drug seekers because we all are looking for relief from our chronic pain. If it takes drugs to help us...then so be it!!

    This kind of threat makes me think this Doctor would not treat your BT pain.

    Run as fast asyou can away from this quack!!

    Best of luck to you.

    Cheers :H
    Patsy W
  • i had one fitted on 31st May 2012 and develped a blood clot on my wound site which wasn't diagonse until the dated my stimmulator was due to be switched which was 12 days after implantation.The pain from the blood clot was worse than been in labour with my two children. With the blood clot forming i had i have the 12oz clot remove and a drain fitted for 72 hrs. Then i've to now do two weeks of rest to allow things to settle down and heal but it will take up to 6mths to heal fully. My only concern for anybody thinking of having this done is to make sure there is a good back up team for aftercare as when i had all the pain with the clot nobody wanted to no because it is such a specialise field. I'm now waiting to find out what my pain doctor is going to surjest now. I'm going toask about the pump.

    Best of to anyboday

    Karen x
  • I had one implanted Dec. 8th of last year and it was a complete waste of time... the pain it went through to get it was not worth the little benefit I get from having it. I have had very little success with it helping with my pain and in order for it to do so, I have to turn it up so high I can't walk. Take Pat's advice, get yourself another doctor and don't let this one bully you into doing something that you don't feel is right for you!
  • backbback Posts: 190
    edited 09/11/2012 - 4:57 PM
    Hi Finzzzup. I'm really curious about your post above and the thread you started, 1st Pain Mgmt Appt Friday. You indicate in the other thread that you had your fusion 14 months ago putting it around June/July 2011. You then had your stimulator implanted in December 2011. That's an awful short time frame, 5 to 6 months, from fusion surgery. It can take up to 2 years for a fusion to be finished. How did your trial go for the stimulator? It seems that your treatment plan is very condensed and your body is not being given a chance to figure out what it wants to do. I had my fusion surgery 5 years ago with a revision a year later. I then had to wait another 18 months before I finally got my stimulator. That seems to be the standard timeline that most medical teams take. My PM was the one who recommended the stimulator. My PM and Spine Surgeon are in the same practice, so that simplifies a lot for me.

    Have you had your stimulator reprogrammed? I'm with you on how high I turn mine up to. My Medtronic Rep has been real understanding and very helpful in getting my programs set right. It took at least a year to achieve the success I have now. I get real jealous when I read about some of these newer stimulator people getting 75-80% relief. I only get 40-50% relief. Without it, I doubt I could work anymore. I'll try anything that my medical team suggests or recommends. My PM suggested I try an inversion table a couple of months ago. I bought one and have been very pleased, because my stimulator seems to be working a little better now.

    I hope you figure things out.

    B.
  • To what I feel was a greedy ortho....I was partially paralyzed on my right size during my fusion and have extreme muscle wasting on my right leg from my calf to upper thigh. The nerve pain was so great I was told this was the route to go. Now I know it probably was not, because as you said, my body had not had the time to heal properly. Now I am constantly having to be re-programmed and a couple of the plastic leads that attach the wires to my spine have worked loose and are probably gonna have to be removed in the near future.One thing going for me is the Medtronic Rep I usually deal with... he is awesome! Very understandable why I've ditched my ortho, eh?

    Lucky you!! An inversion table! I had just bought one before finding out I needed surgery and there is no way I will be able to use one again. I loved that thing too!!!
  • Hello
    I have had my implant since May 2012 and have had some relief,but a far cry from total relief I still have to use meds.
    There are ups and downs to the stimulator in my case it helps keep my mind off the pain to a limit but does not eliminate the pain,so the decision is upto you and your Dr. You also have a trial run to see if it helps
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Theresa, I presume your doctor wants you to have the SCS trial first but, if not, I would definitely find another doctor ASAP. I have an SCS implant from St. Jude and I had two separate trials before the implant as I need the help for lumbar and thoracic pain and I have leads in both areas running off the same implant. From the trials you should have an idea if you are getting relief worth having the permanent implant. All of us are different and your experience may or may not be the same as another person. I get about 30% pain help with mine - some docs may require that you get 80% relief before they will do the procedure and other docs may not. My PMP and I discussed the value of my implant and agreed that it was worth moving forward as I was very miserable and I could not take enough pain meds to enable me to function. If your doc does not want to discuss the pros and cons, I would move on to another because my experience is I need my doc to "LISTEN" to me and not just lecture. With my doc sometimes that is an issue so I have to stand my ground and make him listen which can be hard sometimes but it is my body and my pain so I am the boss of me. :)

    If you want any specific details we can use the private messages to communicate. Best of luck. Jerome
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Theresa, I presume your doctor wants you to have the SCS trial first but, if not, I would definitely find another doctor ASAP. I have an SCS implant from St. Jude and I had two separate trials before the implant as I need the help for lumbar and thoracic pain and I have leads in both areas running off the same implant. From the trials you should have an idea if you are getting relief worth having the permanent implant. All of us are different and your experience may or may not be the same as another person. I get about 30% pain help with mine - some docs may require that you get 80% relief before they will do the procedure and other docs may not. My PMP and I discussed the value of my implant and agreed that it was worth moving forward as I was very miserable and I could not take enough pain meds to enable me to function. If your doc does not want to discuss the pros and cons, I would move on to another because my experience is I need my doc to "LISTEN" to me and not just lecture. With my doc sometimes that is an issue so I have to stand my ground and make him listen which can be hard sometimes but it is my body and my pain so I am the boss of me. :)

    If you want any specific details we can use the private messages to communicate. Best of luck. Jerome
  • Id deffinatly get to a better pm preferably a neurologist/pain mgmt. Larger hospital inlarge cities that also have the large university hospitals is the best place to find one, the ones on their own I wouldnt bother with them, and if their not in a cllinic or large hospital that has specialest, they probably screwed up too much and thats why they are privet Mal practice inurance is ungodly high especially if it involves drugs injections and the mega hospitals in big cities have blanket coverage on their surgons. I go to IU hospital in INdy ,In. IVe had my spinal cord stimulator and i'd die without it not really, when this one bites the dust, Ill have the new IPG put back in ASAP. you were awake durring the trial wernt you? yes it hurts like the devel, b/c the doc has to keep moving the leads and you have to tell him if that is wher the pain is and if its better , if not they willmove it slightly more each time asking you if this gives you relief, mine took quite a while, a couple of hours and it hurt like he!! then iat the sae time had the pns trial to help my back its still experimential (perifiel nerve stimulation) for the lower back L4/l/5 he went to deep and I wont repete what I said , they also had my whole bodyand all the way over my head covered so no germs, b/c of the scar tissue was why he had to really shove hard and it HURT BAD got the temporary ipg hooked to the leads, then put a large sheet of some type of plastic to keep everything in place and keep fromgetting infections. I LOVE MINE and I will use it until I die, and i'm taking it with me, after im creammated they can put the IPG in the urn too. sorry that was a little TMI this was the best thing in the world i hurt so bad cause I had a lamnectomy and I had alot of scar tissue he had to push through. I also have a pain pump. Rose
  • I had a trial implant on 23 October, and went straight from that to full implant on 13 November (through Guys & St Thomas, London, England). One thing I find rather strange is the fact that they usually only give 7-10 days for the trial, yet I needed most of that time for the pain arising from the operation to reduce enough to determine how much pain relief I was actually getting. I've got the Nevro unit which is high frequency, for those whose back pain is considerably worse than combined back/leg pain, and because it's high frequency, it is switched on 24/7. I had tremendous relief from one of the three programmes during the trial, it was wonderful. A friend said that I was walking completely differently, no longer like I was walking on ice! It was wonderful... and now coming up to three weeks post-full implant, and I'm still delighted. Here, the goal IS to reduce pain medication, quite considerably, and that would be great because I'm really exhausted by the side effects of strong painkillers.

    I've read some of the experiences others have had, and it's such a shame because my limited experience certainly suggests that the SCS implant will make a major improvement to the quality of my life.
  • Hello everyone! I had a back surgery (laminectomy, an intramedural tumor was removed...thanks God it was a good tumor, and didn't grew again also) in 2007. In 2009 I started to experience shooting pain in my right leg, and the dr put me in hydrocodone. Now I'm taking 4 pills a day of gabapentin (500mg) and 5-6 of hydrocodone( 1-10T). There are good days when I'm taking only 1-2 hydrocodones. Scar tissue formed, and the drs told me that they do not reccomend another surgery and sent me to pain management. The thing is that I didn't try anything to solve my problem, as they all insist that I should have this implant. But what's the point if I still have to take pills?? I have to mention that my surgery was performed perfect (I've got lucky, I think, to find a very good neurosurgeon in Italy), and beside this shooting pain, I am ok. Yes, I'm experiencing a weakness in my right leg (but that was before the surgery) even if the drs said is strong, in some areas of my legs I do have a low sensibility, I do not walk perfect (I think is a habbit) and I can't run. Beside all this I function perfect, I can do anything (from working, cleaning, lifting, carrying, sitting, standing...anything that a person without health problems can do). Now, my pain specialist prescribed me Butrans patch (10mg), which I didn't bought yet because I've read that they are addictive. Are these patches worst than the hydrocodone? There are other medicines (non-narcotics) that could work for me?
    So, my question is: did you try anything else (even if didn't work for you) before you accepted the implant? Is there anything else that I can do?
    Please, please help me with some answers!
    And excuse me for my bad english (the last english lesson I've had it was in 1998).
    Thank you for taking your time to read my story!
  • After exhausting all options for pain management control ( all that was possible ) had lumbar back surgery L5 S1 and ended up with failed back surgery syndrome, lumbar radiculopathy and scar tissue. In August 2008 had an permanent spinal stimulator SCS and now I am disappointed. My findings are that the quality of your chronic pain change. The stimulator no longer overrides the pain. Suggestion look very carefully into SCS implant. My physician now wants me to take meds again, but because of all cortisone steroids injections and dependency long term opiates I have osteoporosis. I do not wish to take any more chances with narcotics and meds. Hope this comment helps.
  • Hi all. New to the group. Thank you for all the helpful information. I've had a SCS for about 6 years. Used it the first 6 months or so and never used it again. Never hit the pain. I'm now having a lot of pain in that area every morning I wake up, along with lower back pain. I'm thinking about having it removed but would like to hear if anyone else has ever had this done? I would
    I've to get some feedback if you have...how long the surgery took, pain level from surgery, recovery time, any other complications. Did you have any pain from the stimulator before the surgery? Thank you on advance for any info you can give me.
  • HoopahHHoopah CaliforniaPosts: 1
    I have had my stimulator in for 2.5 years. I had immediate side effects. However, I didn't think to attribute them to the stimulator, at first. My stimulator is for pain in my lower lumbar region (right side, more severe on the left side). The paddle is placed in my thoracic region. I've had difficulty with incontinence, severe muscle spasms (from my neck down), nerve pain like never before, fatigue, and other symptoms. The device has stopped working on the left side, completely. This is the side that I really needed it to cover. I have to increase the stimulation on the right side just to feel it on the left. That was their solution for me when I was reprogrammed the last few times. I'm in the process of getting the device removed. To be fair, it could just be that my body is rejecting this foreign object. I am not sure. However, I do regret having the device put in. I think the need to better evaluate whether or not someone is a good candidate for it. I do wish that they would have just offered me a TENS Unit instead. A device that I had never heard of until after my surgery. I would have been a lot better off. Thank you and be careful. 
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