Tuesday, December 11, 2012

Surgery Booked and Fundraiser

My surgery fundraising page can be found here: http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820

In other news, surgery is booked for March 12--I feel like I have 3 months left to live.

Sunday, December 9, 2012

Planning for surgery

I'm planning on scheduling surgery in March.  This surgery will be another complete reconstruction of my cranio-cervical fusion.  I recently wrote to Dr. B for some information about this surgery.  Here's the email I sent him, with his responses after each question.  More surgery--sounds like a good time to me.


Dr. B,

Hi.  I’m writing to you with a few updates and questions regarding my upcoming surgery.  I understand that I have been approved by the surgical review board for a craniocervical fusion revision.  I am planning on scheduling that surgery in March, working around the schedules of my mom and my husband, who will be helping me with recovery.

I wanted to update you on my condition.  I began having episodes of left-sided paralysis in the middle of the night, after sleeping for a few hours.  The paralysis affected my whole left side, including the left side of my face, and lasted for about 10 minutes.  Then it would wear off.  After that happened a few times, I began sleeping in my collar.  So now I wear my Aspen collar 24 hours a day, the only exception being when I’m in the shower or in traction.  As long as I wear my collar, I do not have episodes of paralysis.

Also, I have been exercising regularly, and I am in really good shape.  My core is very strong and my heart is strong.  I hope this will help this recovery to go more smoothly.

I have several questions about my upcoming surgery and recovery.  Obviously, I will do everything in my power to help this fusion to be more durable.  I want to understand what I can do to help the healing.

1. What caused my current fusion to fail?
            Lack of adequate bone fusion to reinforce the hardware, with consequent metal fatigue.

2. How much damage will be done removing my current hardware?
            Not much.

3. What is specifically planned for my new fusion? 
            2 screws in the condyles (aka the base of the skull), 2 screws in C1, 2 screws in C2, 2 new short bars 3.5 cm long.
How will it be different from my current fusion? 
            Shorter and stronger.
What are the benefits and risks associated with the updated fusion technique?
            Stronger and shorter.
            Risks are the same as the old one, with the addition of a small risk of affecting the hypoglossal nerve (which commands the tongue)

4. How long will I need to wear a collar after surgery?
            5 months.

5. How long should I wait before I stretch or turn my neck after surgery?
            5 months before you work on restoring range of motion.

6. What is the goal of post-surgical PT?
            Helping soft tissues and (later) the range of motion.

7. Will it ever be safe to sleep without a collar, or should I always wear it to sleep?
            No need of collar at night, or while washing, or in bed, or while eating.

Thank you so much for your help.  I want to be as prepared as possible for this surgery.