In Sept 2013 I went to the doctor as I had been experiencing tingling in my little finger on my left arm which then went numb. I was referred to a consultant but as I didn't get to see him til April 2014 by then I had lost muscle mass just above my left thumb and between it and my forefinger and had no feeling in my last 2 fingers. He thought I had carpel tunnel so I went for an operation for this but on opening up my elbow he discovered a fibrous tumour like growth in my nerve so closed me up and referred me to a plastic surgeon, Mr. Lewis,  who specialised in nerves in the Ulster Hospital Dundonald. By now I was unable to feel my little finger and fourth finger, had lost all power in my hand, was unable to move these fingers together and had chronic nerve pain.  He operated in November 2014 and removed as much of this 10cm growth as possible but told me that as it had grown through the nerve sheath it was not possible to remove it all. Over the next year I waited for the nerve to regenerate. To cope with the pain I took 150mg of Tramadol morning and night along with 100mg of Lyrica night and day also. After a year, so in 2015, I noticed that I was beginning to be unable to straighten my elbow. This worsened over the next 2 years and it was now obvious that the nerve had not regenerated correctly, my contracture continued to worsen and I was suffering chronic pain. Mr Lewis took my case before the complex case committee. I have always had MRI and CT scans but now they also took xrays to see what was happening in my elbow. Together they came to the diagnosis of melorheostosis. The orthopaedic consultant Mr. Eames also from the Ulster Hospital told me he had never seen this before and that they needed to plan the way forward together. He made it clear to me that this was unknown territory and that there were no guarantees of success.  They thought that the bone growth was impacting on the nerve so in November 2018 I went for a joint surgery to release my elbow and relocate the nerve. Again on opening my arm, they discovered that the bone had grown across my elbow but contrary to what they had thought the bone was not impacting on the nerve. Instead a growth had grown around the nerve and was compressing it but also that each individual fibre within the nerve was also being compressed. They spent 4 hours trying to release this. I am now recovering from this facing an unknown future still taking medication to dull the chronic nerve pain. I have been told it will take over 400 days for nerve to fully recover. I am due for a review in January 2018. I now have so many questions. The tumour and bone growth are obviously related but is this tumour going to continue to grow back leaving me facing an operation every few years? How quickly does the bone grow? Are there other options for treatment? At what speed does this disease progress?