Tuesday, September 4, 2012

News from New York

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.


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


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.