7th January 2005
Hi Anne,
When I got there, the main doctor in charge of the study shook his head as he walked in - most PFD patients are rather short - I am 5'10". So right off the bat - he questioned whether I had the MAS form of the disease. I still went through the entire protocol except at the time a bone biopsy. The next month due to the extent of damage in my elbow - I went back up for a bone graft including a bone biopsy from my shoulder. The biopsy sealed the deal. Unfortunately no doctor in the US could identify my disease. It ended up 6 months later that the world's best bone pathologist came up with the diagnosis of Angiomatosis of the Bones.
I visited NIH for the next 2 years as followups to the clinical study even though my diagnosis had changed. I could not speak more highly of anyone than those doctors at NIH!!! If you ever have an opportunity to get into one of the clinical trials - do it!
Now I see an orthopedic oncologist (even though it's benign - it's still tumors and oncologist are the only ones familiar with any tumors and the best treatment). He is a 3 hour drive away but worth it. I have pain medicine for when it gets bad (the winter is never good). I also did a trial of Aredia infusions, but there was no improvement after a year of treatments.
I live near the UT Medical Research Hospital and my original orthopedic surgeon is there. He has had 2 other patients with FD diagnosis. One was a single tumor which was fine after surgery, the other is full body (as I am). I keep in touch with her.
Let me know if I can answer any other questions. Just know that I am here for you anytime you need me.
Melinda
When I got there, the main doctor in charge of the study shook his head as he walked in - most PFD patients are rather short - I am 5'10". So right off the bat - he questioned whether I had the MAS form of the disease. I still went through the entire protocol except at the time a bone biopsy. The next month due to the extent of damage in my elbow - I went back up for a bone graft including a bone biopsy from my shoulder. The biopsy sealed the deal. Unfortunately no doctor in the US could identify my disease. It ended up 6 months later that the world's best bone pathologist came up with the diagnosis of Angiomatosis of the Bones.
I visited NIH for the next 2 years as followups to the clinical study even though my diagnosis had changed. I could not speak more highly of anyone than those doctors at NIH!!! If you ever have an opportunity to get into one of the clinical trials - do it!
Now I see an orthopedic oncologist (even though it's benign - it's still tumors and oncologist are the only ones familiar with any tumors and the best treatment). He is a 3 hour drive away but worth it. I have pain medicine for when it gets bad (the winter is never good). I also did a trial of Aredia infusions, but there was no improvement after a year of treatments.
I live near the UT Medical Research Hospital and my original orthopedic surgeon is there. He has had 2 other patients with FD diagnosis. One was a single tumor which was fine after surgery, the other is full body (as I am). I keep in touch with her.
Let me know if I can answer any other questions. Just know that I am here for you anytime you need me.
Melinda