Thursday, September 20, 2012

So much to think about

Well, I received a very surprising email from Dr. B yesterday.  He told me that the TCI surgical committee has approved my Cranio Cervical Fusion Revision, and I can schedule it any time.

I am not ready to schedule a surgery that I don't even know if I want to have!  This is the same surgery that was done two years ago.

I wrote back to Dr. B with a list of questions.  He answered quickly, so I'll include the questions and answers here:

1. What exactly is wrong with my current fusion?
Dr. B's answer: A bit wobbly.  One screw is in a suboptimal position.

2. Which of my symptoms could be caused by the suboptimal fusion?

-headache and neck pain?
-autonomic symptoms?
-dizzy spells and nausea?
-reduced endurance for upright posture?
Dr. B's answer: Probably all, especially if the symptoms are improved by lifting your head up.

3. What would the surgery entail?  How much of my current hardware would need to be replaced?
Dr. B's answer: We would remove the old hardware and implant new screws in C1 C2 and occiput, plus a new (thicker) bar.

4. What is my prognosis with and without this revision?
Dr. B's answer: WITHOUT: You would probably stay the way you are, with minimal changes of hardware breakdown.
WITH: About 80% chance of improvement, especially if the symptoms are improved by lifting your head up.

OKAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  What now????????????????????????????????

This is so much information to take in.  I have no idea how to handle all of this new information.  I thought my fusion was fine...all this time.  And why is it wobbly?  And why isn't the screw in the optimal position?  How did this happen?  The last crazy, major, invasive operation was supposed to fix anything "suboptimal" about my fusion.  So now, just two years later, I'm supposed to go back and give them another go at it?  Sure, open me up...remove tons of metal and bone...remove my entire skull-spine joint...and try to get it right this time???????

I'm not actually mad at the doctor.  Just in shock at the situation.  I'm approved for another surgery.  Usually, I'm ready to schedule it and get it over with as soon as possible.  But this time, I don't think I'm ready to dive in again.

The last surgery took about 18 months to recover from.  (9 hour operation=18 month recovery)  How do I decide that it's time to give up another 18 months of life?  How do I figure out which 18 months I want to miss out on?  How do I face having my body ripped up and re-made, and the agony that follows?

So many factors to consider:
-My level of functioning has been relatively high in the last 2 months.  The last 10 days have been horrible, though.  Drops in blood pressure and heart rate, needing even more sleep and rest time, crazy bad migraines, needing my collar at all times, even during sleep, and a lot of nausea spells.
 -I currently have just started another new group of piano students, and resumed lessons with several older students.
-My husband and I will be moving next summer.  Don't know where.  It depends on where his PhD program sends him for his internship year (2013-2014).  How will I work around this? Will I be able to move with him?  Am I willing to spend a year apart from my husband for any reason?  (This one's easy--no, I'm not.)  Does that mean I should get the surgery over with now and hopefully be recovered enough to move with him in the summer?
-How do I know if this surgery is worth the risk?  You give up so much, but have no idea if it will be worth it at all.  Maybe there will be improvement?  But will it be worth it?
-How long can I reasonably put this off?  I already need my collar full-time.  How bad is it going to get?  Isn't it better to go into surgery when you are strong, thus reducing the recovery time?

All of this is on my mind full-time now.  It's just sickening to have this hanging over me like a dark cloud.

Anyway, I just thought I should let you all know where things are at now. I truly don't know what to do about my life.  I feel like a lost cause...

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.