Originally Posted by Jules14

Hello, I have had CRPS since 2014 from a bunion surgery. I had serious osteopenia in my foot that developed sometime during my first year after surgery. I'm not sure when exactly because the surgeon who had performed my botched surgery never sent me to a pain doctor or told me about the osteopenia. He never diagnosed CRPS for fear of a law suit. I did have an EMG/NCV a year later and it showed a femoral nerve injury and an occlusion of an artery that happened during the surgery. I was not informed. I had such serious pain that I started to beg the surgeon to amputate my foot. Finally 10 months after my surgery he suggested that I get a second opinion. My hot/cold purple, swollen horribly painful foot was diagnosed within the first 2 weeks after seeking a second opinion. My guess is that I developed the osteopenia soon after surgery and that it continued until I had treatment in Italy in 2015. I owned a gym and was a jump rope coach so for me to have such bad bones in just my CRPS foot was very odd. I entered the first clinical trial for Neridronic acid and became almost completely better until a relapse at 9 weeks post infusions. I only received a half dose as I was in phase 1. My foot had been breaking. I had at least 5 stress fractures and wore a boot to protect my metatarsals. In Italy, I was at the hospital that the original Neridronic Acid clinical trial had been completed. I received 400 mgs over 4 days. That was in December and by March an X ray of my foot showed no signs, at all, of osteopenia. The first infusion helped my pain because it had been only 12 months since my surgery. By the time that I got to Italy it was 18 months post surgery and it didn't help my pain at all. However the fact that it made my foot bones whole again was a miracle and I never suffered a stress fracture again. I started getting Lidocaine Infusions a year ago. I get them about once every 3 weeks. My pain went from off the charts down to about a 1-4. I run 4-8 miles everyday. It has been a second miracle. You can get bisphosphonates in the US, but I don't think that Neridronic Acid has come here yet. You can find out about where to go in Italy by emailing the company that sells the drug. It was Grunenthal but may have changed. Or you can call one of the clinical study centers where the study was performed to ask about where to go in Italy. Don't pay the expensive tourism charges to get the medication. You can set it up yourself. In 2015, my entire treatment was $800 US. Plus your travel expenses. There are some bisphosphonates available in the US that if used correctly may help as well. This is very serious medication and can have some extremely bad side effects if used too much. Any questions? Please ask, Jules