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Pain Stimulater for Occipital Neuralgia

Posted , 5 users are following.

marlene33746
marlene33746

I had this unit put in in Dem. 2013 but because of the lead trying to push through the back of my neck it had to be revised in August 2014.  Was doing great until January 19, 2016 when the lead again pushed entirely through the skin on back of my neck.  Now my insurance company will not approve for me to have another unit put back in.  I was free 90% of the time with my unit in and now I am back to having so much pain in this area.  It makes it very hard to have any quality of life except to wait around for another horrible burning pain that takes 3 mores days to overcome each time.  Has any one else had their insurance refuse this especially when it worked great?

2 likes, 12 replies

12 Replies

  • lindagkelly
    lindagkelly marlene33746

    Posted

    dear marlene,

    you are telling me that the lead pushed through the skin on the back of your neck? That must have been horribly painful in itself.  I would call an attorney both for the device pushing through your skin, and for the insurance refusing to pay.

    • lindagkelly
      lindagkelly

      Posted

      also call your scs representative
    • marlene33746
      marlene33746 lindagkelly

      Posted

      It was more of a very cold sensation with a shock feeling like when you cut your finger and then realize it has happened.  Thankfully no infection had started as I was told to go to the emergancy room which was at the hospital I had it done at which also was 150 miles away from my home, and then had to stay in the hospital for 3 days until a surgeon could remove it.  What is a scs?  Thank you for responding to this!
    • kilee
      kilee marlene33746

      Posted

      An SCS is a spinal cord stimulator with leds and a main unit that gets recharged and manages the program .
  • mel77
    mel77 marlene33746

    Posted

    Hi Marlene:

    Why would this happen.  It was either inserted wrong or the doctor didn't know what he was doing.  The insurance company should understand that isn't your fault and should work with you.  Unfortunately, these insurance companies won't.  If they have to pay for it again, then they feel paying it from their pockets and it's stuffed anyway with greed and not caring for anyone.  Personally, I literally dispise them.  They are getting away with murder and no one is stopping them.  I am sorry to say when O'bama care became law, we have been getting screwed with how we can be helped.  All this bill did was to make everybody insured but disregarded the care that is given.  They should chuck it and make a clean sweep of all these insurance companies and get rid of the one's that scam you.  My opinion.  As far as your problem, yes I would call SCS rep, compain to your doctor to make it right, and if need be, get a lawyer and see if he can do it on a contingency.  It is too expensive to pay upfront and still no guarantee of a win.  You have to battle the medical hospital and doctors attorneys.  I am not an attorney so I can't advise, of course.  For you to suffer this kind of agony of a terrible mishap, is beyond reason.  All I can do is to feel the pain that you are going through and wish you the best luck possible.  Those wires need to be taken of and maybe I can advise you of this.  How about going to the ER?  Makes sense to me and at least you will have the medical care in at least fixing that part of the lead that is prodtruding which can be dangerous.  If the lead is still exposed, then as I am writing this to you, I would urge you to take care of it as of now.  Please Don't Wait.   I would like very much to hear from you and what was done to help you .  Take care of yourself and try hard to keep up your spirits.  All my best to you.

    mel

    • lindagkelly
      lindagkelly mel77

      Posted

      Hi Mel,

      I think s he has has it removed, but now she can't get approval from the insurance to get them put back in.  But this happened TWICE!  I was just googling it, and apparently it's a fairly high risk. I think you are right on the money, she should contact the company that makes the neurostimulator and talk to them about what happened.

      "With occipital nerve stimulation, there has also been a significant lead migration

      requiring subsequent surgical intervention. Slavin et al. have reported 10% patients

      experiencing lead migration which required surgical intervention (6). Similarly, Melvin et

      al have reported 9% lead migration (7). Popeney et al. described a slightly higher rate at

      3/25 patients (12%) having spontaneous lead migration which required surgical

      intervention. However, in a study of 15 patients done by TJ Schwedt et al, there was a

      33% lead migration 6 months post implantation, 60% migration after 2 years, and 100%

      migration after 3 years.(2). Due to a lack of studies with large sample size it is hard to

      quantify the percentage of patients that will experience lead migration and subsequent

      surgical intervention.

      Another serious complication

    • marlene33746
      marlene33746 lindagkelly

      Posted

      When I recieved my letter from the insurance company stating they were not going to pay for this surgery I was two days away from my pre-op date of Feb 18th with surgery to be done on Feb.22nd.  I called the doctors office with this info of which they had not gotten this notice..so my doctor made contact with the insurance medical director of same company name but in  Il. who bluntly said no to coverage even though the same company in Michigan approved it 2 two years ago with no hesitation.  I had a melt down as this blind sided me to think anyone could be so thoughtless and callas as the ins. has done  to me.  Don't know for sure where the blame lays if doctor or ins.  I just know that I am the one who is losing all the way because of the medical bills and also with no relief.  My life is in a hold and not sure how when or where this can be justified.  Any help is much appreciated.  Didn't know much about the migration as my was working awesomely until it was removed because of erosion of the anchor post in my neck.
    • lindagkelly
      lindagkelly marlene33746

      Posted

      what state do you live in? There is an insurance commission board in each state, and if you let me, I'll do a little investigating for you and try to find out who you can contact on an emergency basis.  It must be difficult for you to even type on your keybaord.
    • mel77
      mel77 lindagkelly

      Posted

      Hi Linda: 

      Thanks for making me aware that the lead is out.  Was it done in the ER or at her doctor?  Time and time again it seems that all these newer devices and the electrodes or paddles are not carefully put in.  Something new comes out and it hasn't been tested well enough to determine if it is safe enough for a patient.  Generally, it has to be FDA approved or at least I think it is.  There are clinical trials and that is extreamly important.  The problem with that is you are a guinny pig as it is an experiment.  I know when you go on these trials, you sign y our iife away and the their team cannot be held responsible.  Insurance companies are out of it and it is done with various grants.  I'm pretty sure you are compensated. It is risky and things can go wrong but at least everything will be taken care of.  As a matter of fact, when I was at the pain clinic yesterday, my PA mentioned that there is a clinical trial in Seattle with a new SCS which is supposed to take care of the neck and shoulders as well as the lumbar region.  I inquired about and yet to hear from the doctor that is doing it.  You have to be hospitalized but at one of the best here.  I may not even qualify or not even contacted.  Time will only tell.

      Is lead migration when the lead moves?  According to the time of the migration, it seems that it is common and when talking about 60-100% after 2 years, it doesn't appear to be very successful.  It can be serious and I will think twice about having this new SCS done.  If it takes away the pain, that in itself would be fabulous.  But, I still don't want to suffer the consequences.  Since this is public, I am sure that marlene will read it.  I am checking for the info that I told you about.  So, bear with me and hopefully, I still have it.  Take care, be well and be happy as you can.

      tiger  xxx

    • lindagkelly
      lindagkelly mel77

      Posted

      Hi Mel,

      I sent Marlene a private message about this article that is very clear about the high risk of lead movement and even about problems with the anchor which I think she was discussing. I had to try to figure out what she was saying. I'm sure it must be difficult for her to use her keyboard right now.  Here's this great article.  I hope she got it because you know how it goes, you are typing along, and everything disappeared.  I've tried at least 3 times now, but I don't think she got any of them. It doesn't help that it's 1:00 am here and I keep dozing off. Here's the website.  It is a medical and statistical paper, but very clear. http://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1006&context=neurosurgeryfp

    • marlene33746
      marlene33746 mel77

      Posted

      Hi, I'm still waiting to hear from my ins...BCBSIL to respond to my situation and recondieration of original surgery.  I live in Ga. and have involved the state comm. and IL state comm. plus sent in another request to my ins to have this unit reinstalled.  To date I have been on hold with life activities and family get togethers so as not to aggrevate the occipital pain burning sensation.  On a mission as long as I can.
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