The term “Rare Disease” suggests unknown territory, complications and no easy answers. That terminology definitely describes my rare bone disease.
My Orthopaedic Specialist appointment today didn’t fully deliver on my previous “Great Expectations” post but on some levels it did. It certainly delivered a sense of direction and further understanding of what it means to live with a “rare” disease.
My Specialist was hopeful a new medication, suggested to him at a conference, might work for me but after consulting other Specialists on my team he found it would actually make my situation worse……so not an option.
Stem Cell Therapy or transplants and Plasma Rich platelets injections etc, are also not an option in my case. My bone disease, last year, dissolved a bone graft within 3 months of surgery, taking everyone by surprise. My Drs have never seen anything like it.
My Specialist said today, “Sam, we have no idea what your bone disease will do when we try to intervene and because of that we won’t ever take the risk of trying something that has no strong evidence of working in more normal cases”.
My Specialist explained a stem cell transplant, in my case, could trigger serious complications. Lots more research is required in this area for complex Orthopaedics and it was explained I’m too high a risk for complications to be used as a guinea pig. My Endocrinologist has said the same in terms of research trials.
We are also still holding off on major surgery to replace the pole in my left non union femur, as it’s still hanging in there with no cracks, despite being under pressure from supporting a 3 year old break. That’s a miracle!! We are celebrating that as we all agree I don’t need more surgery unless absolutely necessary.
I’m having a bone scan on Friday as I have suspected right sacrum and tibia fractures. My bone disease is still progressing so we need to make sure that any stress fractures are not in bones that could cause serious medical issues by becoming major pathological fractures. If there is evidence of stress fractures, surgery may be unavoidable. We’ll cross that bridge if we need to.
While there is no great miracle cure or new treatment option ahead, I’m very happy with the appointment and the ongoing care from my medical team. Sometimes with complex diseases it just is what it is and accepting that is as powerful a pain reliever as any medication or procedure.
I feel relieved not to be taken on a wild goose chase and to know that I am in safe hands.
As my appointment was coming to an end, my Specialist said to my husband and I that I am always at the back of his mind. He won’t give up researching and wondering about what might be best for me. I really can’t ask for more than that. 💗
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
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