Welcome to this little plane in the NeuroTalk universe! Gotta tell you our Pumpers on here have been few in number, one of the most active I remember being bobinjeffmo, but he has not been around and his dx was not as yours.
One thing I can and will do for you is give prayers since I do know how to do that even though my education is in a far different field apart from medicine. Reading regarding your condition in the National Institutes of Health pages gives me tremendous pause, however, for it seems the adjuster/medical practitioner/insuror claims rep failed in their reading regarding your situation. Surely, your docs can mount an appeal which should push the envelope here for treatment to provide the care you need to deal with the pain. The study I have done regarding the pain pump back from the days before I set foot on the SCS path speaks deeply to the notion of direct systemic delivery of the medication without the loss of effectiveness attendant with prescribed oral meds. Goodness, by the time the liver has processed the meds and allowed what it will into the system you receive little effect without the higher doses! Bobinjeffmo liked the pump because it delivered the undiluted solution precisely where it was needed, and when, so he could live a more normal life...... and more power to him and his caregivers!
So, I will rant a bit and pray a lot with hope in my heart you will see your needs met,
Mark56
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