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Need Advise, Need to Vent...

I had the trial for a spinal cord stimulator November 27th, it was a huge success, for sure over fifty percent relieft, sign me up, Im ready for the implantation! Well, it is now March 8th, and I am still waiting. My pain guy and the other surgeon cannot find a date where they can get together, so I suffer, and suffer. What am I supposed to do? I call and call, Ive got the office lady practically in tears with the sob story but that doesnt help any, she isnt in charge of anything. Are there any ideas out there? Has this happened to anyone else? I can't start over somewhere else, I don't want to have someone new to the whole scs complete the surgery, I can cry (done), I now I just laugh and make light of it because it is such a painful disapointment. Please tell me this is common and youve gone through the same thing....


  • I have no experience with an SCS implant nore with pain clinics/doctors. Unfortunately, I think you need and should "start over"... from the stand point, what if you get the implant and a few days later get an infection? Well, the pain doctor could easily say the surgeon should treat it who could easily say the pain doctor could treat it... etc.... To me, you have given them plenty of time. Now, again, please listen to anyone on here that has experience with this because I guess it could be common practice to take a year between trial and implantation... I hope this is resolved quickly so you can get your relief.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • They usualy set the date soon after the trial as the hospital should of called you to set a date, But few month wait can hapen but date on there calendar should be given to you already, There is no reason you should not have a date set already,

    I think I had mine put in within a month after the trial, But trial went beter then after the implant ,!
    I was pissed leads were not put perfect on spot as it was during the trial,
    To move it would again be another surgery and I am tierd of it so stoped using it,

    They wake you up during the implant and ask you how it feels as rep from the Scs company has to be there also turning it on asking if you feel it in the right place and all,

    But when you are so half out of it hard to say if it's in the same place as it was during the trial,
    Good luck hope it works out for you as it works I guess for some people,
    I am not sure I would start with another dr as they I am sure have you on there books at this point just hang in there and try to get a date confirmation !

    Best wishes,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • RickilalasRRickilalas Posts: 559
    edited 03/08/2013 - 8:28 PM
    My surgeon decided I needed to try the scs after four spine surgeries years of PT and two years straight of PM with injections every two weeks. My wounderfull insurance Co denied me the first time and said I should try PT first.
    I had to get paper work from PT even though they paid for it. Next denial because I should try PM with injections and RF so my PM had to show everything to them even though they had payed for it. Then the last denial was I need to try spine surgery first. What a joke to prove to them that I had the surgery that they paid for. They finally said OK for the lumbar test with 16 electrodes in two leads. This was probally more then 8 weeks and a lot of paper work from my doctors. Trail was so good I wanted to try the cervical one also so if it was good we would implant both at the same time.

    We applied for the cervical trial and got a denial just like the first one. I called the insurance Co and they said they didn't turn it down but a doctor under contract with them did and he didn't have access to my records. WTF
    I called the doctor doing the review and left a message that i felt him saying I didn't had surgery, PT and PM again after showing him I did just a few weeks before this was malpractice he sent in a OK for that trial.
    Odd though it was written for one lead with a electrode. I called insurance Co and asked about that and they said don't worry it would be two leads with 16 electrodes total.
    Trial was down and it went great. So we then had to get approved for both implants which took about two months after the last trial. My surgeon felt bad for me and did the lumbar surgery implant on a Friday which he doesn't do surgery on Fridays but he took care of me because of the wait the insurance caused.

    During all this time my reps were ready but their hands were tied. Because of scar tissue I didn't get the cervical implant done even though it was approved it wasn't safe at this time without a major surgery which will come later.
    My insurrance paid for the lumbar trial and implant right away but didn't pay the cervical bill for over a year because of the number of leads and contacts in the approval that was wrong.

    OK long story and maybe TMI but I just wanted to show you even with the doctors fighting for you the insurance company may be holding up the implant OK and then the doctors need to be availible and most good ones are booked up way ahead. And there is a chance that the manufactor of the scs is behind in supply also.
    If you like your doctors. I would not change now because it may start everything over.
    I would ask the doctor that did the test what is going on and then call the surgeon that will do the implant where it stands and then call your rep and make sure things are availible.

    If your still reading this your board man. I just wanted to say my surgeon did wake me up in the OR and asked me about coverage which didn't come up my legs far enough so they sort of knocked me back ot and moved the paddle up two places. I am finding only about half of the people with implants had their surgeon do this.
    To me it should be required.
  • alexhurtingaalexhurting Posts: 1,991
    edited 03/09/2013 - 4:05 AM
    Lol yep I am boared , It's early morning just waking up as I was reading , I had 3 trials with the Scs before I finaly agreed to have it put in, The 3 trials was within 8 or 10 years of course as the last 1 seemed to help some so I went for it,

    They offered me the padle leads then made a switch on me as rep from other company was nowhere to be found or something, Medtronic rep showed up instead of the st Jude Scs which we first agreed on,
    I asked the medtronic rep if I am still geting the paddle leads she says no Medtronic don't use paddle leads,

    You are correct if insurance is involved and need to be aproved who knows how long they can drag it out,
    With me that was not a big issue as I am on ssdi and seems they don't question it ,

    They woke me up also and asked questions during the implant but here I am dreaming about nurses in short skirts and hot bikini chicks as they asking me how does this feel ? I said it feels fine now shutup already close me up and let me get back to my dream !

    These doctors I swear have no respect for a man in his sleep, The nerve of them waking me up,

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I guess we are all at the mercy of those who can maybe help us. Only those of us who have this chronic pain can acutally understand what this chronic pain is like and how if effects our entire lives as well as those of our families and friends. How can these people just choose to ignore me? hey look, they say to me, we got this device which may help, you should try it. I try it, its great, I imagine walking without my walker, working full days, being able to clean my house, making meals for my children again, and then what, they just stallllllllll. But, I was thinking, if this is a company, someone has gotta be in charge, and someone in charge of thatperson right, so should I start making calls to these supervisors or whomever? My concern, am I going to piss these people off and then they may not be as careful as they should, or put their best effort into my care. It just all sucks and I am so sick of being at the mercy of others.
  • Yes, you might piss some people off, but you should still be your own advocate and do all you can to get the ball rolling. I'd suggest you call the doctor's office again and flat out ask who the CEO is for the practice and explain why you are asking. Even if you do piss off the surgeon because he gets chastised for not seeing about his patient, in the end, he is a trained professional, and if you respect him on that level, I'd have to thin 99% of these people would still do the best they could during your surgery. They aren't highschoolers working a McDonalds who would on a whim spit in your food... they are much older, and I'm sure much more mature. And if you are able to get a date and if the surgeon seems "pissed" I'd have a real heart to heart before the surgery. Good luck, I hope you get your date soon.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • There is some weird crap going on in the SCS field right now. I have medtronics with a paddle.off the record I was told why paddles or no paddles which brand over another and it all comes down to CASH
    It looks like we don't count anymore.
    Alex was your medtronics done in hospital or Pm office? After you got Medicare was it better? Mine is in a few months.

    Pandqmama. Keep on them. Call your insurance Co and see where they stand and if a application has even been filed. This way you can ask the doctor with knowledge of where its at to see if he is being honest with you.
    We have to stay on top of our cases. One of my surgeries was never put in for by surgeons staff, he thought it was but it was dropped. I had a emergency that day.

    All Metal
    You can still be cremated the scrap metal guys line up at the cremation places for scrap. LOL
    I know'a'women that use to do cremations and she has some really funny but odd stories to tell.
    I will be buried. LOL
  • The drs have to resubmit now becuse it has passed three months.
    I agee with your statement about these being professionals, i think i get so frustated my mind wonders. Ya never know, maybe they will spit in my back, jk.
    I did make a call to another place once and since I would have to start all over from even before my trial, I just assumed my insurance company wouldnt think so hot about that.
    Rick, do you currently have two scs? Would you do them again?
    As far as I know, I am having the medtronic paddle lead implanted.
  • Pandqmama ( Rick, Alex, etc.), :-)
    I have a Medtronics cervical SCS with the paddle so I just wanted to comment on that since I noticed the post about Medtronics not using the paddle and wanted to clear that up. I have really appreciated comments to my questions throughout this site and Rick, especially, is usually right on! I waited only short of a couple of weeks following my trial when I went in for the implant. I too was slightly conscious for what I think must have been less than a minute, in order for the Medtronics rep to test the device for correct placement and get my response as to its accuracy. I have only had this one SCS but I'm amazed at all the red tape and documentation that so many have experienced. I've never thought my insurance was all that great but I have to admit that they were very good about approving both the trial and implant quickly! My PM was also great in that they submitted all documentation very quickly to my insurance for approval, knowing my deductible had been met and about to start over ( this is definitely not a cheap procedure)!
    So anyway, I agree with Rick in that I would not want to start all over with a new doctor after all that you have been through already! I know you missed your window of opportunity for having an implant within last year's insurance period and I really am sorry that happened! Do you think your PM could give you a tentative date in the future that the doctor and surgeon will both be available? That would at least give you some idea as to how long you're looking at before getting the implant? Was one of the doctors gone on vacation or something like that, perhaps? It just seems like an unusually long time between the trial and implant!
    Rick actually responded to one of my comments a while back when I felt like I was "bothering" and "upsetting" my PM with frequent calls and concerns. He said to remember that those doctors work for you, not the other way around, so keep on them and don't back down regardless of how you think you might be bothering them (you sound like me--I always worry too much about what others think and hate to upset anyone)! Everyone's experiences and suggestions on this site have helped me a lot regarding how to approach my doctors and ask the right questions, especially Rick's since he has been through so much and knows a lot about the SCS procedures!
    I REALLY, REALLY hope you get a date for the implant soon!! Good luck!!
  • Now the question is will they change it again. As of right now, I am set for May 2nd. Since this is like my fifth date, I don't feel real confident that it will stay but I certainly hope so.

    Is there any advice any of you out there can give me to prepare for the surgery and the recovery?
  • I've seen/read lots of people on this forum with these, so hopefully they can chime in with lots of advice.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • RickilalasRRickilalas Posts: 559
    edited 04/01/2013 - 5:09 PM
    Sorry I have not checked this thread for awhile. In the future if you need anything its ok to PM me anytime.
    I have a very poor DSL service for the last few months and have to get it fixed again and again.

    So I am glad to hear you have a date for implant. My spine journey started in 2006 and I have a great relationship with both my PM and Surgeon so they did everything for me that they could. Now saying that not everything has gone off on time and one time my two three hour surgeries for the same day took over 12 hours and my surgeon even had to cancel the second surgery for who ever was waiting behind me so keep in mind things do happen that even the doctors can not control.
    Another issue I found over the years is that a good surgeon is booked months ahead.

    In my case I had both a trial for the lumbar scs and then a trial for the cervical scs. My post above shows the problems I had getting the insurrance to do their part and I know they like to slow things down and take as much time as they can.
    Once your insurrance gives the OK then we have to be worked into the doctors schedule and with SCS we have to add a rep who is availible from the scs manufactor so it is a job to get it all in place. Now saying all of that I do not think they have done you right and could have worked something out a bit quicker.

    I had the lumbar trial first and it went great with no problems then we had to apply for a cervical test so if it worked I could have both implanted in the same surgery. It appeared to me that my doctors didnt really want to do them togather both from a safety point and I think cash came into play also. I believe the innsurance would have paid less if done togather.
    My cervical trial was approved and we did it. It went as well as the lumbar unit trial. Keep in mind most insurrance will not pay for it unless you get atleast 50% pain relief this is why they ask us many times how much percentage wise it helped.
    Not one person ever asked me if it was worth it just what percentage did it help.

    OK both trials went great and my PM put in a request to my insurance co to have both units implanted with Paddles yes medtronics does do cervical paddles under two conditions. One there is room and two the surgeon or PM doing the implant has the training and a OR to do the implant. My PM will not do the implants because he feels its not safe for him to do it. He did do the trials in his office and did place the perc leads in in his office. he could do a implant with perc leads but feels when a paddle can be used its better but it has to be done in a OR. I have talked to people that their PM did their implant with perc leads that cannot be attached so they float which opens you up for more problems in the future with migration.
    We have another member on this forum her surgeon did a implant with the perc type leads but he did laminectomys to anchor the leads which I belive could be has good as a paddle. here again it seems that its up to the doctors and weather a PM wants to turn the surgery over to a surgeon for the patients good or do it in house for his gain.
    Here again we have to get doctors that we trust and have our best interest in mind not just income.

    Now my case was odd in that my surgeon wanted to do these implants years before I said OK and I tried and tried to get by without it. On a Friday I went to my PM for my regular appointment and he told me that the insurrance had just sent the approval for both units to be implanted. He had already called my surgeon and faxed the approval to him. I had to call the surgeons office that friday to get a appointment for the following monday with my surgeon. They gave me a code phrase to use so I was not given a apointment in two months or longer out. So on that friday I called got a Monday appointment to see the surgeon. At this appointment I watched him go over his calander and it was full. He is a administrator at a university hospital and told me he would do it the next friday which was his administration day but if we did it early he would be OK.One week from approval to implant.
    I was shocked at how quick he did it for me. But during the pre op that day he told me I did not have room for leads to be placed in my cervical area so he could not do the cervical implant untill my next neck surgery which should not be two long. my first was in 2006 and a second one in 2007. My leads for the cervical SCS has to come down from the top and will be
    more involved then the normal install. My medtronics rep was dissapointed because I was going to be her first double.
    maybe if I wait long enough something new will be here to try it changes so quick now anyway.

    To answer your questions yes I would do the lumbar implant again and I sure would have done the cervical implant if I could have. Again I trust and feel that my doctors have my best interest in mind and are doing what they can for me.
    I am very lucky that when there is a question they call each other and put it on conferrence call so I hear what they have to say and none of this stuff about leaving a message for each other that dont get answered or calls not returned.
    I have had my lumbar unit about three years now and I do need to call this week for a reprogram as pain is changing. I do not know how the other companys are but with medtronics I have three reps I can call 24 hours a day and they do get back to me pretty quick. I have my favorite rep because I feel she trys harder then the others have but I can not complain about the others at all. In the begining I had a few reprograms as it scared in which is normal but for almost a year now I have not had any issues. I dont remember if you named the company you are going to use but they are all almost the same they make small changes to the units so its a different unit and they dont get sued. It appears one company now is doing what might be called unfair bussiness practice in my mind to gain sales but thats a whole other story.
    If you dont use medtronics make sure about how much a repair or replacement remote is mine are free its been posted that BS charges $1200 for theirs or want you to buy a service contract to cover repair of the remote.
    NO matter what ALWAYS keep the remote with you. You never know when you will need it.

    Above Alex posted that they changed companys on him at the last minute. I met the medtroics reps when we did the testing trials and one of them was there for my implant also. They did implant the unit and then wake me up and test it.
    I would ask your doctor if they do this or not because when they woke me up the sensations were only comming half way up my legs. I was able to tell them this and the surgeon moved the paddles up two more vertibre. I have coverage in my lower back to my feet, most people do not get the lower back coverage. The rep said he could have programed the unit to give me the coverage without having the surgeon rasie the paddle but I am glad they did it the way they did.

    Before surgery there isnt a lot you need to do. make sure you have all your meds and extra pain meds. I will not kid you I was told this was a very easy surgery with some discomfort. WRONG
    This was painfull for the first five days, just as bad as my fusions but the pain did drop off quick after those rough five days.
    I dont remember if yours is cervical or lumbar but they will do laminectomys to place the paddle they are small but still painfull but well worth it. Your recovery will be fairly quick with the first week the worst, just plan on being home in bed with help to get your meals. All I did was lay in bed, got up for the bathroom as few times as possible.The second week was much better. I was walking around and eating at the table then. Just be carefull give it time.
    I used a IPOD with a alarm on it for my pain meds everyday and night I have found from past experience its better to treat the pain before it hits you then trying to fight it after its there. Again this is for the first week.
    Just look at the future and its worth it when I had the cervical trial in I could mow my yard and clean up around the house without it I cant.

    One last caution keep it clean and dry. My surgeon wanted me out of the hospital as quick as possible and at the time I did not agree with that. we had a few words after surgery but he explained to me with this surgery if it gets infected the infection can travel up the leads inside the spinal canal and cause all kinds of problems. I am afraid this may have happend to MelW who was posting on this thread. She had a infection and they kept treating it. the way it was explained to me by a surgeon who did the clinical trails on scs that any infection means the whole unit needs to be removed quickly then the person needs to heal and go for months with no infection before trying again.I hope Mel didnt get caught up in this.

    Anything else let me know I will check here and PMs

    Good Luck
  • pandqmamappandqmama Posts: 175
    edited 04/01/2013 - 6:33 PM
    I am a lumbar, after my discectomy and then fusion, I am left with failed back surgery syndrome. I too am going to have the medtronic unit. I did meet a few reps, one at the trial and then he was there for the check-up and then another for the removal, both were very nice and made me feel very comfortable.

    I found out that the orthosurgeon, the man who will place the paddle, was out of the country with the 'Dr.s without borders', so, I feel a little silly complaining now knowing that he was out helping others

    Considering my surgery is on a Thursday (hopefully), I am considering staying with my mother for the first few days. Its not that my husband isn't helpful or my children self sufficient, just I may heal a little better with quite and worrying about what I could be doing.

    I trust both of the Doctors who are implanting the device. I first went to the surgeon, he is known around my area for helping people who no one else will, and I guess he did because nobody else had mentioned the scs before. I had injections and ablations and have been told I've got to try everything before they will allow the scs.

    Ok all you other spinal cord stimulator peeps out there, before I go under the knife, anything would you do differently? what did you use that helped? How long were you off work? Did you stay in the hospital or out that day?
  • edited 04/02/2013 - 3:28 AM
    From what I have seen there are some wonderful helpful people on this board/thread.. Thank you!!

    My surgery is set for Friday April 5, 2013. I am getting a lumbar SCS with paddles from St Jude. Can anyone tell me how long it takes to charge the battery? lol I know kinda silly ..I can't decide where I want the battery placed..my stomach? or rear end?..
  • Hi Tracy
    I have a medtronics unit which will be similar to your St Jude unit. They may or may not follow the same procedure for charging after your implant but it is a good question that you should ask your rep. Write down all your questions so if they are rushed you will not forget.
    My unit had almost a full charge when implanted. They met me in recovery and did two simple programs to use before my two week checkup. My paper work from medtronics said not to recharge battery before my post op checkup.
    My rep from medtronics was at my doctors office for my post op after my surgeon said OK the rep set up four programs for me and went over the settings I could change and then they showed me how to recharge the unit which is pretty simple.
    Later I found out they do not want the first recharge started until the surgery site was pretty much healed and no sign of infection. I am sure they will cover everything with you and they will be available on the phone also for any questions or problems you have.

    My implant is in my left back side just above my belt line. If it were in the belt line I could see it being a problem. It does show some but in that location it does not bother me. For me that just sounded better then in a bottom location or belly. Its just a personal choice as long as surgeon can place it and not have any problems with the leads to it.

    Good Luck. Just a few days now
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