I am a 41 year old nurse with neurofibromatosis type 1. I had back surgery to remove tumors in 2005 and pain has progressively gotten worse since that time. I have been through physical therapy and on a drug regimen that is either too high and making me somnulent or too low and not making my pain tolerable. I have been through pain management and gotten the duramorph injection which was effective but short lived. That was followed by a caudal block which was not too helpful and a week later the caudal was to be done again but they were unable to get in. I am no longer able to tolerate the drug regimen because it made me pass out. Currently, I cannot do much such as walk that far or go up and down stairs without great pain. I do not want to go back on the medications because I am greatly concerned that I will have a more severely negative outcome. I see a NF specialist at the Cleveland clinic who has recommended a pain pump. I transferred from my original pain management team who recommended a pain pump to another at a different hospital who also recommend the pain pump. My PCP who has treated me since the surgery recommends the pain pump. I had to be pre-approved by my Medical Mutual and they denied the pain pump based on "Neurofibormatosis diagnosis does not warrant a pain pump". Has anyone else with NF out there had problems getting a pain pump through insurance? It kind of peeves me that whoever reviewed my case for this pain pump must not know a whole lot about NF. Its just not on the skin. I am currently appealing but that is another 30 days of pain and limitation.