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new member first post scs???

Hi all,

Let me give a bit of background, I have been diagnosed with herniations/tears/bulges on the levels of L2 through L5
periphrial neuropothy in both feet and I think sciatica and chronic pain.
2 years and a few months later I am still dealing w/ constant pain no sleep anxiety and depression, I have not worked in over a year at this point I think surgey is the only thing that can help me

I have been offered a scs,
I have never had surgery, I have been through the epidural injections numerous times, which did help but dont last long intensive physical therapy program. Psycological evals....the whole shebang.
I have been at the care of an excelent pain management Dr and he is suggesting scs.
At this point I am concerned that if I do an scs implant trial/permanent implant, will that be able to be reversed if I need surgery?
I think he is opting for this before surgery because it is less invasive??
I thought scs was last resort after failed back surgery?
Is this a new school of thought or am I missing something or misinformed?


  • I also have not had surgery yet but am close to getting the scs. I saw my pcp today about this/ Im getting ready to leave for a few hours and will post more with you tomorrow. We can even pm each other. Im .asking the same questions. Ive had the trial months ago Talk to you latter
  • I suppose everyone's experience is different. There are so many different factors involved about having invasive spine surgery versus scs - but, if you have total confidence in your pain management doctor, who seems to have given you excellent advice so far, and have been reassured by him/her that scs is the best way forward, then I would go with it.

    For me personally, having the Nevro Senza was recommended by my pain management consultant as the only means left to try and reduce chronic pain. I have gone through too many conservative treatments and tests, have had the fusion surgery and the revision, which have all contributed to even more pain down the line - i.e. sacro-iliac joint pain on top of the pain I have had for many years. I feel that the scs trial I underwent in December 2012 gave a positive outcome, although it doesn't touch the S.I. joint pain at all, which is a shame.

    I have wondered that, if I had this scs trial in the first place, would I have avoided the need for such invasive surgery in the end. Who knows. But in your case, if you start the trials and it is successful for you, then you have nothing to lose. OK, so you won't be able to have MRIs any more, and may make the x-ray machine at the airports go off (you would need to request a hand-held wand if possible, rather than go through the walk-in machine), but you would have avoided fusion surgery, or the like, which you cannot reverse. At least this way, if further down the line, your pain continues or increases (which of course I hope it doesn't), then you have the option of having the scs removed so that the surgery can take place.

    Wherever possible, and this is only from my own experience, but I would think that anything that avoids having invasive spine surgery with the long recovery it entails, has got to be the best solution. In saying that, the operation to implant the scs leads was pretty painful for me (but this might be because I had 4 spine operations before and already had pain from scar tissue build up, I don't know).

    I hope you continue to be reassured by your pain management doctor that this is the best way forward for your particular condition. Will you let us know how you get on?
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Hi Sue, I have been going through the same as the person who posted first. So I just got back from my PM and ask him "do WE did a spine guy"? "In case I continue to get so much worse that the SCS will have to be reversed in 2 years" He said "No." I SCS will hopefully replace the need for the painful and not always helpful fusions. Every level on my neck is herniated, abutted, arthritic, spurred and/or impinged. BUT The arm pain stopped for the most part. As did the neck. It's my upper back and shoulders. And it's every bit as bad (constant muscle pain and like a burn) We are now adjusting meds before scs surgery. Trying ER morphine. I dont want to go into surgery pain on top of the pain I have now. SO, Yes now I fully trust him. He's not doing the surgery, but a PM dr is. Not a neurosurgeon. I was worried about that. So next 2weeks, hoping to get my meds stabled and on the table.
  • Prior to doing the SCS surgery, I would recommend seeing a Neurosurgeon or Orthopedic Surgeon that specializes in spines. It sounds like your PM doctor is steering you down the path he wants you to go. You should hear what the other type of doctors have to say. Your neck is not going to get any better, probably worse over time. If the nerves are being compressed, the nerve damage can get worse and irreversible.

    An SCS will not replace a fusion, it will only hide the pain. Herniated discs in the neck are not ones to stick your nose at. Please spend some more time researching this.

  • reesemayrreesemay Posts: 67
    edited 02/15/2013 - 1:14 PM
    Thanks all for the feedback. I too have not had the opportunity to speak with a neuro
    That is why all my concern. Not having had the opinion of a Dr that deals with back
    problems and conditions symptoms. From the symptoms I have, I do not understand
    why I have not been to a neuro yet. I think I am going to have to tell, not ask...then again
    maybe go thru w/the trial and see if I can get some relief...I know it is reversable. I have concerns w/
    scar tissue in an area that I dont think is causing me problems, and am worried that new scar tissue
    will cause problems in the lead placement area. Plus my doc only wants to do the trial for 2 days and has
    not mentioned if he will reduce my meds. All of the trials I have heard of are for a minimum of 5 days...he is worried about infection.....yes no yes no yes no........crap I dont know!!!

    Some of the threads I have read are from back in 2011 about scs cost. Can anyone give me an idea what a BS scs costs? I will also have to ask about remote replacements if I ever need one
  • Two days is not enough time to do a proper evaluation. I really think your PM doctor is trying to steer you down a path without all of the information in front of you. My trial lasted 6 days and I needed everyday to determine if it was right for me. I think you may find that the Ortho/Neuro docs might not want to see you if you go down this path. Do all the research and see the all of the doctors for a proper evaluation. If your PM doesn't agree with that approach, that should speak volumes.

  • reesemayrreesemay Posts: 67
    edited 02/18/2013 - 1:21 PM
    It is very diffcult to decifer the answers when 2 different people are talking in one thread (hi-jacking my thread)
    Hopefully a moderater can intervene and allow my thread to be answered by other people in my same situation
    No disrespect to the other members, but please open your own thread, so I can get proper answers.
    I am the original poster and my screen name is "reesemay" not terri
    As origionally questioned, my scs trial is only to be a few days which I do not understand.
    Everything I have read is at least 3-5 days or more.

    Also I would like to know if anyone here knows the cost of the trial and the cost of perm SCS??
    I am more concerned that I will not be seen by a neuro after this has been done.
    I have read where other docters do not want to intervene after another Dr.
    Thanks for the answer if it was directed towards me, I am uncertain???
  • My trials were done by my pain management doctor and then the implant was done by my or tho surgeon.
    They were both involved and had discussions on the phone while I was there. My thoughts would be that yes you need a spine surgeon first before any trial. Trials are simple but there is a invasive procedure to do it.
    Infection can be a problem with a trial but its not a issue if you keep it clean and dry. Two days is not enough time for a trial. I would be very careful of who does your trial and who will do the implant based on their experience.

    Next issue
    There are three major brands out there that I know of and they are very similar with the remotes connecting in differant ways. By radio or magnetic field. Medtronics has not charged me for a replacement remote or antena.
    On another post they say they were charged $1200.00 for a remote when theirs quit working,(BS)
    I would talk with at least two SCS companies before making a choice.

    Trial cost. I had a lumbar test and a cervical test my insurance paid $6000.00 for one and $7000.00 for the other
    Without digging the papers out I do not remember which was which.
    I didn't get the cervical unit but I did get the lumbar unit implanted.
    My insurance Co only paid around $14000.00 total for the unit and implant. Others have paid more depending on the contracts with the other insurance co. I have been told some go as high as 40000.00.
    Has your insurance even oked the trial yet?

    Hope this helps you and everyone above was trying to help also

  • I apologize for the confusion, my response was meant for you. I have a Medtronic stimulator. i don't have the records anymore for how much my stimulator cost. I do know that my out of pocket expenses were minimal, meaning I was responsible for my co-pays and deductibles. Like Rick, I have had several remotes replaced and my charging belt free of charge by Medtronic. I think anyone considering an implant needs to ask these types of questions of the Manfacturers to insure there is no hidden costs down the road.

    My stimulator is implanted in my lower back and supports the nerve damage that effects both my legs below the knees. I recently had to have a CT scan of my neck for some issues that I am having. The images from the CT do not have any of the detail that you would find in an MRI. I suspect I will have to go back for a Myelogram. As you can see, the stimulator will make diagnosing future problems a little more difficult.

    Can you make an appointment with a spine specialist on your own? If not, your PM Doctor should be more than willing to supply you with the referral. If he/she is not, then you should seriously consider finding a new doctor. Although an SCS can be removed, it requires another surgery to do so. Depending on how the unit scars in, it's possible they may not be able to remove the leads in the future.

    Again, sorry for the confusion.

  • TerriPTTerriP Posts: 303
    edited 02/16/2013 - 6:31 AM
    Sorry for confusion, 2 DAYS IS NOT ENOUGH TIME. The procedure is a tad rough on your body so I was pretty wiped out the next day. It can take 2, 3, or 4 days of meeting with your rep. or reps. to adjust your settings. That requires driving to and from Dr.'s office, time and patience to get the best settings and see how your pain responds. You need every available day for the trial.
    I had seen 3 surgeons 4 years ago after my 2nd car accident. They all said fusion. They cut for a living thats what they will say, that was my experience. I have gotten much worse in last 4 years, so Im glad I waited. Im not seeing a surgeon for scs implant as Medtronic does not use a paddle for c-spine. A neurosurgeon doesn't have to do the surgery as it's a tad less invasive for cervical. So Im told. My PM only uses Medtronic. If it were T-spine or Lumbar, then yes, the rep will help find the best surgeon after the trial. And you and the surgeon will go from there.
  • reesemayrreesemay Posts: 67
    edited 02/18/2013 - 1:20 PM
    I have already inquired about short trial to my doc. I know this probably sounds gross to most people, but i go days w/o showering, I just dont care anymore and dont go out unless forced to.
    IE: groceries.

    So if I have to go 5 days w/o showering, I dont mind. Someone invented handle shower heads and i have one. Easily can wash without getting dressing wet. I guess I am going to have to ask again. I am not comfortable with only short duration. I Have been told that i am hypersensitive to pain, but think that doc did not recognise terrible spasms/pain.

    Thanks for all the input..how do i approach this doc to get trial longer? HE has only done about 100 of the trials. Do you think this is enough trials to let him continue? OR Should I request neuro consult first? How much does it cost to get my own neuro consult?

    Thanks for the replies

    Oh yea, i was told i would get paddle leads for trial. I DONT know if they will attach to bone or in epidural space. I THINK I recall him saying 8 per paddle will have to ask again.
  • Yes, I would ask, no demand to have a consult with a neuro first. I highly doubt he will be using paddle leads during the trial. Paddle leads have to be surgically implanted and anchored in. Trials usually use percuntaneous leads which are implanted via a hollow needle in the epidural space.

  • RickilalasRRickilalas Posts: 559
    edited 02/16/2013 - 5:59 PM
    Have you been seen by a spine surgeon yet?
    You need to find out what rights as a WC claim you have in your state. In my state after 30 days you could see your own doctors as long as they would except the WC pay chart This may have changed now. Each state has their own
    Programs. Have they said surgery would help or has it even been talked about. Other then the SCS.
    What treatments have they tried?

  • reesemayrreesemay Posts: 67
    edited 02/18/2013 - 1:17 PM

    Thanks again for the replies
  • OK your last post clears up a lot and shows what you have been through.
    I have had my ScS almost three years now and last year I had nerve roots compressed at L4 and L5.
    They did that surgery without any effect on my SCS and they removed my hardware from the fusion
    on that side then took care of the nerves. So yes you can have surgery after a scs.
    Only question now, is do you need fusion or not and if not would a SCS work. Only a trial will tell you.
    In my experience WC doctors did not always have my best interest in mind. Do you feel your pain management doctor is working for you or the company? I see you were not happy with the surgeon you went to which I understand, I was not happy until I was seen by a third surgeon and I went with him.

    What rights do you have as far as what doctors can you be seen by? I would start there.
    This trip we all take sucks but we have to look out for our self.
    In most cases SCS or a pain pump is the last choice and not offered until everything else has been done.
    I wish you luck with getting the right doctors and the right information.

  • reesemayrreesemay Posts: 67
    edited 02/18/2013 - 1:17 PM
    So thank you guys very much for listening to me whine!!!
  • How do you copy your MRI picts like that? And do you know how to copy the actual MRI to another disc?
  • dilaurodilauro ConnecticutPosts: 9,875
    edited 02/19/2013 - 4:06 AM
    This is just the nature of open forums. Most of the time, members will post topics that are directly related to the thread originator. But you will find members who will make posts, not directly related to your topic but talking about something they have experienced.

    There really is no way to stop this or enforce this. If we tried, we would be spending more time doing that then we doing with handling Spam and other true forum violations.

    The only possible way to stop those hijackers would be to have a Captcha for every post made on this site, followed by some questions that need to be answered regarding the original thread. I would hate to even think about what they would do to the overall flow of these forums.
    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 for the reply. I think you are right people are trying to help me, but it just gets confusing sometimes.
    I think it is cleared up now.
  • Went to another PM appt. My MRI for placement of the leads has not been approved, so still waiting on insurance ...again..
    My psyco eval went well. "I am normal"
    I re-asked about only 2 day trial for test scs and he is set on only 2 days for trial because of "infection" he also told me that some people only get 5 minutes on the table and then he takes the leads out....a 5 minute trial??? I dont get this at all.
    I am not happy with these answers. Maybe I can get the surgeon who is supposed to do the permanent scs to do the trial as well. Not happy with just 2 days for trial. For heaven sake the leads are covered w/ tape and gauze and sterilized before they are covered. He has done about 100 trials...is this enough??? I think the other thing is they are going to get me to this surgeon who will not do wc surgery, but will do wc scs perm implants.

    He is supposed to be one of the best surgeons in town. Thats prob why he wont take wc, they get tired of all the fighting and court dates and depo's....not something I would want to have to deal w/ if I was a DR. He needs to be on with the buisness of being a doc not going to court all the time wasting away his time instead of seeing patients and his profession...surgery..

    OH yea, and the original MRI....the place lost my original....how interesting...
  • TerriPTTerriP Posts: 303
    edited 02/25/2013 - 7:12 AM
    Mine will be Medtronic. They have a website and you can call a nurse or others. They can also refer you to a Dr that does trials near you. Go for a 2nd opinion or go with a different dr just for the trial. Used to be very few PM's used this procedure. Now many are learning it. My PM, I was the first neck he ever did. The Rep was instructing him. He used 4 stitches and a mile of tape. The PM's put the leads in. The reps do the hard part of getting the stim coverage. Your rep may help you with your concerns as they know all the dr.s they work with and know them well.
  • So I guess you are very lucky. Still.......do you have a wrk comp attny? If they want you to sign off on a 2 day trial????? Has this doctor really done 100's of them???? I guess Im saying your lucky if this is workmans comp, but sounds like the Dr doing the trial wants it in and out and then you are the surgeons problem. Who is gong to follow you for the year or more after the perm is in? Most people still need some level of help with meds after surgery and a lot of help with programs. Done in PM's office? Who will do this? Just dont let them say it's in case closed. my opinion anyway
  • reesemayrreesemay Posts: 67
    edited 02/25/2013 - 6:00 PM
    My PM doc is supposed to do the trial. He wants it to stay in for only 2 days. He has done 100 only of the temp trials.
    I am not comfortable w/ only a 2 day trial. I think I need to ask him to transfer me to someone else to do the trial, in my opinion only 2 days is not enough time to test this out, I can keep it from getting wet so I dont get any infection.
    As far as I know he will be my PM doc after the trial, I dont know. I will be sent to a neuro for the permanent scs.
    I want the opinion of a neuro anyway to see if some type of surgery could or would be better than this scs. I am concerned that if I go to see him and he already knows an scs is approved, then he wont talk to me about surgery.
    I am pretty sure once this is in it will not be case closed. I will have to be followed somehow, for future treatment, and as far as I know ALL meds will not be cut off. This thing eventually will need the battery changed, so no it cant be case closed.
    I have already spoken to my rep and she was very informative, I just have to figure out how to ask my questions right so they know how to answer them. I do understand some are placed on the dorsal horn, and some are in the epidural space.
    I think my trial will be perc leads in the epidural space. He does not want to go into great detail about it, I think they think most people will freak if they have too much detail, ME I want to know all about it. He says on his reports, that we talked at great length, which was about 3 minutes???? I think I need to take more notes on this, because I have no rebuttal in their notes as to what they say or dont say. I am looking forward to getting this done though..hopefully I will be able to walk and be out and about longer than now. Which I keep to a minimum because I know how much I am gonna hurt if I do too much.
    I do have a very good atty. My PM will do the trial then to neuro for perm, the PM doc has a surgery center connected to his office for proceedures, they do ESI blocks, discograms facet injections and a bunch of other stuff. I did have a plan for all the facets and discogram, but he stopped that midway into the plan then went directly to scs instead. I dont know why, he never told me. I dont know who will follow me after trial. After Perm, maybe the surgeon, and meds I think the PM doc. I will have to ask next appt. Good questions!! THANX!
  • Before you go any further, you need to get answers to your questions. The surgeon who does the implant will be done with you after your follow up to remove the stitches for the perm. The battery will need to be replaced in 6-9 years. You will be with this PM Doctor's patient for a very long time. I'm sorry, but I don't think this Doctor is being very forthcoming with you. You need to bring an advocate to your appointments..

  • TerriPTTerriP Posts: 303
    edited 02/26/2013 - 7:28 AM
    Im really surprised workman's comp has gone this far. Who would be an advocate? The attorney? On the other hand the PM could say she is not co operating and no neither. All of us who have had the trial done, did so and knew to keep it dry. I would ask the rep assigned to this doctor what the results are with 2 dys. Can the rep program in 2 days? The manufacturer has recommendations for a reason. What does the manufacturer of the device say about a 2 day trial?
  • I had to go through about every injection there was available not to mention five radiofrequency ablations and becuase none of those worked, that made me a canidate for the scs. I think that between the fact that you didnt try all other options and the weird two day trial thing (I also see so many problems with a two day trial) that there is something you doc is up to. I would maybe look for a second opionon or best a new doctor. Why do you need a scs? What is your diagnosis?
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