Craniocervical Fusion Miracle

February 4, 2014

A picture for people coping with Ehlers-Danlos or other chronic illness.

by Susan B Spitzer, PhD

Don’t I look great in this photo?

I was smiling.  It was taken in the operating room at completion of my surgery.  As you should be able to see, my skull and first two vertebrae are now connected together with titanium rods.  The amount of hardware that protrudes against my skin is limited, thanks to new methods being developed by Dr. Bolognese. The early stages of recovery have been painful.  Muscle spasms got so bad one day that I couldn’t open my mouth wide enough for a bite of quiche!

Such a tragedy to watch my beautiful piece of quiche be carted away in favor of a dose of Valium to reduce the spasms.  It seems like a miracle that I can now eat and speak normally with only typical pain for being about 9 days post surgery. It has been over the past two days that the greatest miracles have taken place.

I’m not just referring to being discharged from the hospital to recover at my hotel for a bit.  I’m mostly referring to the car ride from the hospital to my hotel.  I rode seated, upright, without having any symptoms of drooping brains throughout the ride.  It was cold, snowing, and the many potholes were made more complicated to maneuver by ice.  Despite the rough ride, I kept my head on!  My brains did NOT drop into my butt!!  My butt was my butt and my brains stayed in my head.  I enjoyed the miracle of winter weather with the miracle of my newly repaired body.

The car ride was yesterday.  Today’s miracles were also impressive.  First, I SAT UP and ate lunch, at a table, with family,  in the hotel’s restaurant.  I don’t know how many years it has been since this has happened.

Then, my nurse took me for a walk outside and I threw pieces of ice and snow at hunks of ice on a tree.  Although childish, this, also, was nonetheless a miracle! It appears that there will be many changes in my future.  My life, particularly during the past two and a half years, has been in a lying down position for 98% of my wakeful hours.  Now, I will be able to go places and do things.  Scared, but excited! We fly back home on Tuesday, right after the next winter storm. I hope to stand outside as the snow is falling!  When I get home, I will be evaluated for rehab.  My doctor and I estimate that I should be able to resume recumbent cycling sometime this spring.

In the meantime, my wound is healing well, but itches like crazy!

Thank you all for the wonderful comments on my website, Facebook, and by email.  At times, it is those comments that have kept me going!  I look forward to reading more.   Susan


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(c) Susan B Spitzer, PhD 2019