Wednesday, December 9, 2009

Desperate Message to New York


This is Carolyn. In October, my endocrinologist, Dr. Camacho, finally agreed to start me on Forteo. (20 mcg injected daily) I'm supposed to wait until the end of February for my next bone scan. She is certain that by then, the DEXA will reflect a higher bone density. However, it doesn't feel like I can wait even that long.

I previously taught piano lessons to 25 students. Gradually, I've had to stop working completely. I am now restricted to bed 99% of the time. I'm missing out on my life. I've been quite patient, but I am now in a very desperate situation. I've been seeing a neurologist at a pain clinic, but it doesn't seem to matter anymore. Nothing can help with the severe headaches, arrhythmias, tachycardia, blackouts, choking spells, and nausea. Most of the time, I am so hypersensitive that I can't be touched.

The only thing that temporarily relieves symptoms is traction. That is the reason I am so certain that the revision of my cranio-cervical fusion is the only thing that can help. My fusion was done in 2003, when I was 19.. In 2008, it was found to be "inadequate" during invasive cervical traction. I'm 26 this month.

I understand that I am supposed to wait until I have been on Forteo for 6-12 months. However, it took me 15 months just to convince my doctor to start the Forteo after finding out my BMD was low. My condition has been on a steady decline during that time.

I am wondering how soon it would be possible to schedule surgery. Please. I understand that I am supposed to continue waiting. It just doesn't seem like a possibility anymore. I know how invasive the surgery is, and how long the recovery takes. But the longer I wait to have surgery, the worse state I'll be in at the time of surgery. Is there anything that can be done?

Thank you for your help.