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So, in New York, I saw Dr. Kula, the best neurologist in the world, and Dr. Bolognese, the best neurosurgeon in the world.  First of all, they said that my first decompression surgery was done pretty well, but there is still room for improvement.  This means that if they did a revision (further decompression), I could expect more symptom relief from that.

But, this wouldn't solve everything, because I have a bigger problem: a retroflexed odontoid.  This means that my odontoid bone (the bone at the tip of my spine) is bent backward.  It presses against a bone called the clivus, which presses against my brainstem, particularly when I sit up, hold my head up, or move my head.

To correct this, I would need an odontoidectomy, followed by a craniocervical fusion.  This is one of the most difficult operations to survive, from what I've heard (meaning the recovery is long, painful, and difficult).  I would have the odontoidectomy (which is performed through the back of the throat).  I would then be on a ventilator for 2-3 days, when the fusion would be performed.  Basically, this would mean that my skull is fused to my spine. 

It's not a walk in the park. 

But after these operations, I could expect reduced nausea, fatigue and head pain.  They have the answers I've been looking for, but there's still a long road ahead.  At least they respect me, listen to what I have to say, and believe me!!


At this point, I'm in non-invasive cervical traction, wearing a Miami J collar, and in a lot of pain.  I'm in bed about 80-90% of the time, depending on the day.  The head pain is very severe...often enough to wake me up during the night.  The fact that the symptoms are continuing to worsen means that surgery may be my only option.  We don't have a date set for anything yet, but a return to New York is definitely in my future.  So along with fear and anxiety about having 3 more operations, I've found hope that one day I will get my life back.