Tuesday, April 28, 2009

Expanding on the current state of things...

I had been hoping to be planning my wedding in 2010 (no, I'm not actually engaged yet! I just like to plan optimistically). Instead, it's looking more like planning my next surgery in 2010...and any other major life changes would have to be pushed back further. I lose so many years of my life to this illness. Anyway, I'm about 98% sure that TCI will not be satisfied with blood results alone. Even though, my vitamin D levels are within the normal range, my parathyroid levels have returned to normal range, my calcium output is improving, and the bone markers have improved. I just am under the impression that the DEXA scan showing improved bone density is all that matters when approving surgery. Even though Dr. Camacho feels that the DEXA scan is only a small part of the picture. She feels that my bones are on the right track and getting stronger...although it is way too soon for a DEXA scan to show this.

WHY did I have to go through so many months with endocrinologists wasting my time and refusing to treat me, while my bone density worsened??? So much time lost.

Anyway, assuming TCI does not approve surgery for this summer, I will probably not get a DEXA done until January of 2010, so it will have been a full year between scans. The insurance company will appreciate this (in fact, that's the only way they will cover it). Also, it's the only real chance of showing an improvement in bone density (hopefully).

If, for some strange reason, Dr. Camacho is able to convince TCI of the improvement of my bone situation without a dexa scan, then I will find out within the next couple weeks. I give this about a 2% chance of happening. BUT, if it does happen, I would be in for a big surprise, and have to reassess again!! Then, I would be in the position to have surgery this summer, which is of course what I want...but probably not without a consultation first.

I really have learned about so many people recently for whom fusion has failed, even using the updated positioning techniques. Their symptoms just don't go away. It seems like I would be guaranteed to get better, based on the amount of relief I can get from manual traction (simply lifting my head up, away from my spine) and from invasive traction. But I assume they only do this surgery if the patient experiences relief. So, how do I know if the surgery will actually help me? Reading of so many negative outcomes, which I only found out about by desperately searching for positive outcomes, has made me skeptical. I'm a bit discouraged about the whole surgery. So, I definitely plan on having a consultation with Dr. B before surgery, whenever that may be. I already have a long list of questions put together for him. I'll post that when it becomes important.

I really like to have some sort of a plan for my life. It's the only way I know how to live. In fact, it's how I've learned to cope with my generalized anxiety. And yet again, I've come to a time when the future is uncertain. That brings about large amounts of anxiety about the future, making it impossible for me to exist in the present.

So, at this point, I'm really looking forward to Dr. Camacho sending her report to TCI, to getting the results of my recent blood test, to sending all results to TCI, to TCI receiving the report, and then to hearing back from June about what this means for my future. So, until these things happen, all I can do is wait and wonder...not a happy place for me...especially as my pain persists and my autonomic nervous system fails.