I received my DEXA results in the mail today. Apparently, the woman I talked to on the phone misread the results. I actually made very little improvement. I haven't heard from The Chiari Institute yet, but I am very doubtful that these results will qualify me for anything. But, here they are:
DEXA scan performed 1/14/09:
Lumbar Spine:
The average bone density of the L2-L4 region = 0.989 GM/CM2
T-score = -1.8
Findings consistent with Osteopenia.
Femoral Necks
The average bone density of femoral necks = 0.855 GM/CM2
T-score = -1.3
Findings consistent with Osteopenia.
DEXA scan performed 2/22/10:
Lumbar Spine:
The average bone density of the L2-L4 region = 1. 029 GM/CM2 (an increase of 0.04)
T score = -1.4
While the value has increased, the findings are still consistent with Osteopenia.
Femoral Necks
The average bone density of the femoral necks = 0.830 GM.CM2 (a decrease of 0.025)
T-score = -1.2
The value has decreased, but the T-score has not significantly changed, and the findings are still consistent with Osteopenia.
Basically, this means that I was misinformed. I was told that these T-scores were positive values, but they are actually negative values. That makes a huge difference. If the numbers were positive, I could reasonably be approved for surgery this spring. But with negative numbers and bones still osteopenic, I will have much longer to wait before surgery. There's no way to predict how much longer the wait will be at this time. But, just for fun, I would guess the earliest I could be tested again would be 6 months from now, in September. However, if I wait until November, it would be a full year of treatment. Either one of those is a possibility. Insurance may require that I wait until January. So even that is a possibility. At this point, my doctor has only prescribed 6 months of Forteo. Clearly, I will need more than 6 months of treatment to get my bones dense enough for surgery.
My plan right now is to see my endocrinologist as soon as possible to ensure that I continue Forteo. It would also be good to hear from TCI what numbers they are looking for me to achieve, so that I can convince my endocrinologist to continue with the treatment.
Either way, this is a considerable step back in my progress.
I thought that this leg of my journey, the waiting part, was almost over. I thought I'd be planning two trips to New York in the near future.
Instead, I'm facing many more months of the same. Waiting. Missing out on work. Waiting. Missing out on life. Waiting. Possibly delaying my wedding. More waiting. I just may be the most patient freaking girl in the world.
