Tuesday, February 23, 2010

A Very Big Day

After being diagnosed with osteopenia in March 2008, then continuing cranial settling in June 2008, I knew exactly what I needed to do. I needed to have my cranio-cervical fusion revised. I knew that if I could have my skull raised and re-fused into the sweet spot, I would have less pain, more energy, and a higher quality of life. Dr. Milhorat believed that was in my future, and I do, too. Before I could have that surgery, I would need to have my osteopenia corrected. The medication Forteo was recommended for me by my New York doctors.

Unfortunately, this would be a much bigger challenge than I anticipated. My first endocrinologist refused to treat me, because I was too young, and my osteopenia was not severe enough to require treatment. So, I went to a new endocrinologist. She insisted on trying a year of conservative treatment first. I had no choice. She was willing to work with me and my doctors in New York, so she was the best choice I had. The conservative treatment involved calcium supplementation and mega-doses of vitamin D. I ended up with too much vitamin D in my system, but I still wasn't absorbing enough calcium, based on the blood and urine tests. So, on October 26, 2009, she finally prescribed Forteo, which is one of the only medications known to actually rebuild bone.

I used my Forteo as prescribed, in daily injections. The time until my DEXA bone scan passed so slowly. But when the day finally came, the question was: had it been enough time? Had the bone had enough time to grow?

I had my bone scan yesterday. I got the results over the phone today.

This is how to understand a DEXA scan results:
A T-score compares your bone density to the optimal bone density for your gender by standard deviation.
Here's the scale for T-scores:

Osteoporosis: T<-2.5 Osteopenia: T= -2.5 to -1.0 Normal Bone Density: T= -1.0 to 1.0 Increased Bone Density: T> 1.-0

Here are the results of my DEXA scan performed 1/14/2009:
Bone density at the lumbar site: T= -1.8
Bone density at the femoral site: T= -1.3

Here are the results of my DEXA scan performed 2/22/2010:
Bone density at the lumbar site: T= 1.4
Bone density at the femoral site: T= 1.2

This shows a significant improvement after only four months of treatment with Forteo!!!!!

So, I emailed my nurse in New York immediately. I told her my results. I told her to watch the mail for her copy of the results. And I told her that I'm ready any time for the consultation and invasive cervical traction. So, I expect to hear back from her shortly. And I'll keep you up to date.

UPDATE: I LATER FOUND THAT THESE RESULTS WERE INCORRECT AND I WAS MISINFORMED. THE POST-TREATMENT T-VALUES ARE NEGATIVE SCORES.