Posted 10/9/2017 7:53 AM (GMT -7)
I am so sorry that this is causing you so much anguish. I kind of agree with Susie. You can definitely choose not to receive the medication any more. If you can manage the pain without any medicine in your pump, that's wonderful! Obviously, whenever meds can be avoided, avoiding them is the better option.
As for getting the pump removed, that is a bit tricky for someone who isn't having any medical issues from the pump and doesn't have a lot of money. Insurance companies will typically only pay for the removal of the device if it is causing you some kind of problem. Otherwise, there is a lot of research that shows people have successfully left them empty for decades without using them & have had no problems from that whatsoever. The risks associated with the ex-plant surgery are much greater than simply leaving it in a person's body and not using it. Again, insurers are not keen on paying for something that could end up costing them even more money due to potential complications from the surgery to remove the device.
If you had the money to pay cash for the ex-plant surgery, I would suggest that. With an insurance company, it is going to be quite difficult to try to get approval to have the device removed. I had an SCS that had to be removed due to life-threatening medical issues & even the insurance approval for that was an absolute nightmare that took months of letter writing & 100 hours of research on my part to get approved. I wrote to my state Division of Insurance. I threatened the insurer that my family would sue them for "wrongful death" if they refused to cover the ex-plant costs and I died as a result of the infection that had been going on for 8 years straight. It was a long & exhausting process, and that was with medical PROOF that my chronic infections were directly caused by the implant and were not treatable -- as evidenced by multiple rounds of antibiotics & minor debridement procedures -- while the device was still inside me. The infections were evident within a couple weeks after my implant surgery and caused me to have a lot of expensive trips to the doctor, wound care, infectious disease & the ER ... and it was ultimately a combination of making the case that ex-planting the device would very quickly start saving the insurer money along with the threat (and medical evidence to back it up) that without the surgery I had less than 1 month to live, that ultimately convinced them to cover the procedure. Even at that, I had to borrow money from my family to pay $2,500 up front toward the cost of the procedure since we only had a pre-determination, rather than a letter of pre-authorization.
In short, I guess that means my recommendation would be to try to figure out if there is something that would cost your insurer more than $20K if you kept your pump in. It would have to be backed up by some kind of clinical evidence that the risk actually applies to you. Yes, sometimes things can go wrong with pumps (almost all of them are for pumps that are active, not ones that are off but still implanted in your body) but the evidence needs to be specific to your case -- for example, if you had an inflammatory mass that formed at the catheter site that was causing paralysis, that would be a strong case for getting the thing removed.
I will say that I've researched this thing a lot as my PM has recommended I get one &, after the problems I had with the SCS, I'm quite nervous. I have not seen a single case of there being a battery that corroded & caused health problems... in case that helps put your mind at ease at all.