[josiesdog]

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.

[Mark56]

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,
Mark56zzzz

[eva5667faliure]

I am so sorry to hear the negativity that oozes out from
every angle WHEN IT COMES TO INSURANCE
i am glad you appealed
i pray relief for you in any form

someone who cares
I TOO AM RECOMMENDED THE PAIN PUMP
MY SURGERIES WERE HORRIFIC
I AM TO FRIGHTENED