I wrote this email to my nurse at TCI:
August 30, 2012
Hi Denise,
I'm following up from my appointment with Dr. B on June 8 of this year. He ordered multiple tests at that appointment, including a CT scan, DEXA, and LP. I completed all of the tests in June. I also started an intensive exercise plan and physical therapy immediately after my appointment.
I have seen some significant improvements since my appointment. My heart rate and blood pressure are being well controlled, without medication.
However, if I go even 15 minutes without my cervical collar, I develop an intense headache, followed by dizzy spells, seeing stars, and decreased consciousness. My physical therapist says that I have improved my neck strength and core strength dramatically, due to committed daily exercise. She does not believe that muscle weakness could be causing my problems.
I am wondering what the next step is for me. I am dedicated to daily exercise, including cardio and core strengthening. My quality of life is improved, but still very limited. Even with the collar on, I do need frequent rest to avoid symptoms like head pain and dizziness.
In addition, the Aspen Vista collar that I got on July 2 has gotten a crack in it already. I need a new prescription for a new collar.
Thank you so much for your help. I would really appreciate some idea of what, if anything, can be done for me, and if I will continue to need this collar for the foreseeable future.
Carolyn
I'm following up from my appointment with Dr. B on June 8 of this year. He ordered multiple tests at that appointment, including a CT scan, DEXA, and LP. I completed all of the tests in June. I also started an intensive exercise plan and physical therapy immediately after my appointment.
I have seen some significant improvements since my appointment. My heart rate and blood pressure are being well controlled, without medication.
However, if I go even 15 minutes without my cervical collar, I develop an intense headache, followed by dizzy spells, seeing stars, and decreased consciousness. My physical therapist says that I have improved my neck strength and core strength dramatically, due to committed daily exercise. She does not believe that muscle weakness could be causing my problems.
I am wondering what the next step is for me. I am dedicated to daily exercise, including cardio and core strengthening. My quality of life is improved, but still very limited. Even with the collar on, I do need frequent rest to avoid symptoms like head pain and dizziness.
In addition, the Aspen Vista collar that I got on July 2 has gotten a crack in it already. I need a new prescription for a new collar.
Thank you so much for your help. I would really appreciate some idea of what, if anything, can be done for me, and if I will continue to need this collar for the foreseeable future.
Carolyn
I received this response:
September 2, 2012
Imaging
review
Suboptimal
position of the C2 pedicle screws (R>L)
Some
bone deposition between C2 and the base of the skull
If
the patient is very symptomatic, we should consider a CCF revision
PB
I don't know exactly what this means. But I understand that my fusion is not quite right and could potentially be improved with surgery. I am not considering surgery at this time. For now, I'll keep exercising and wearing my collar. But I know that at some point, when finances and life circumstances are right (or when I get too sick to stand it anymore), I'll need to look into a revision of my fusion, again. I had my first fusion in 2003. I had my second fusion in 2010. And it has never been right. I don't know if it ever will be.
