I saw my Orthopaedic Surgeon yesterday & I am having more surgery on Tuesday the 20th October on my leg. This is to swap the screw in the intramedullary rod in my leg from a static screw to a dynamic screw to jolt the femur into healing activity. Surgery was going to be today but my Surgeon feels I’m not strong enough at the moment physically and he wants to leave it a couple of weeks. A bone scan from last week shows a new stress fracture above the knee because of the screw pushing on the bone and we also found out that I have new stress fractures in both feet.
The worst part for me is that the constant bone pain, joint pain and bone pressure from the Bone Disease and Rheumatoid Arthritis is exhausting. We know there is no cure for the bone disease or any proven treatment either so it is slightly off putting that I am having new fractures. The closest diagnosis for the Bone Disease is somewhere between Osteomalacia & Osteopetrosis. I’ll leave you to Google 😊
Anyway the femur is still broken, one year on, so I am officially diagnosed as having “non union”.
The only other option at this stage ( before considering bone grafting & more major surgery) is to use a Bone Stimulator.
The Bone Stimulator has just arrived and I’ve had my lesson. We now have to get the Surgeon to mark the exact fracture site on my leg to get the best possible results. He’s in surgery today and off on a conference tomorrow for a week so his secretary is going to talk to him about whether I should come down to the hospital today for him to do ” x marks the spot” or whether we should leave starting the treatment until after my surgery and he can mark the spot then. I’m happy either way, although I’m so tired today the thought of having to go back to the hospital after yesterday feels a bit much.😩
Good news is, it’s very easy to use. I just have to use it every day for 20 minutes at the same time so I’ve chosen 8pm at night so it keeps my daytime free & I’ll be relaxing in bed watching TV by then. I have 150 sessions paid for, so 5 months worth. If this doesn’t work I’m staring down the barrel of bone grafting so really hoping we have some success.
The down side is the bone stimulator is not covered by Medicare or Private Health Funds so it has cost us $2000. The hidden costs of a chronic and rare disease are never ending. Something I know I didn’t fully understand until I started walking this long and winding road. Our health system is good but there are many complex diseases that slip through policies & gaps. Even assistance from wonderful organisations like Blue Care and Anglicare has been ceased for people under 65 because the government have cut their funding for this age group.
It’s a fight worth fighting another day I think to raise awareness of these issues. In the meantime I intend to conserve my energy & make sure I use this Bone Stimulator exactly as shown and for the whole 5 months to get the best opportunity of enhancing the healing process. At least I’ll know I’ve tried everything possible.