Yesterday, Dr. Madison called me from his office at OHSU in Portland, OR. He talked to me for about 45 minutes. A very kind man.
These are my notes on what he said:
"My global opinion is that stabilization will help you now more than Forteo"
"If you have surgery now, I do not believe the screws would fall out"
"Your problems are more orthopedic than they are molecular."
He will start me on Forteo and that would help a little (and not do any harm) during recovery-fusing stage. He does feel my bones would rebuild and would "fuse" in a bone graft. His words, "Fusion most likely would work."
When I told him they are going to put a halo on me after the surgery, he said, "Oh well, then, it should be no problem at all!"
He says I have mild to moderate osteopenia. He says I might not have been absorbing the pamidronate (the IV trx I had for 18 mo), though pamidronate stays in the system for five years.
I am in a little bit better shape than what he usually starts people on Forteo are, but we both decided I would start the Forteo as soon as insurance approves it and stay on it for 2 years. He compared my DEXA to one I had done in 2003, and said, "You are sorta holding your own, but you are slipping a little."
My labs (he's doing extensive testing, I have 3 more I'm doing right now) are "pretty normal, levels are acceptable, and you tested negative for malabsorption [of calcium and Vitamin D]."
Today I am doing a 24 hour urine collection, will take that in to the lab (I'm so blessed, I have a lab one mile from my house in the hospital in our little town), then on Thursday I do another 24 hour collection!
But Dr. M is definitely doing a thorough workup! I am so impressed with this guy! Imagine how down I was after that DEXA that said my bones were significantly worse http://jeffersonfracture.blogspot.com/2008/12/im-crushed.html and I had lost 8% of my bone mass!! Imagine if I did not push to see a different endo!! That test was all wrong! Dr. Madison called it a "technical aberration."
So...this is all very good news!
And leads me to make my big decision...
I have sent an email to Dr. B in NY to ask him if we can schedule the surgery. I'm ready. And if he doesn't want to proceed right now, then can we schedule me to go see him for a consult. I need to have this all re-imaged and considered and find out if more settling has taken place...and what to do about it.
I'll let you know.
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