Friday, October 26, 2012


As much as I want to put off my cranio-cervical fusion revision surgery as long as possible, this week has made it clear that the symptoms of the failed fusion are in control, not my life circumstances.  I'd love to wait for a convenient time, but my body is failing again.  I can't put it off much longer.

This week, I have had a constant headache that is similar to my intense migraines, with slight differences.  You know it's not a migraine when straining doesn't make it worse, but every step you take does make it worse.  Sharp pain in my temple, my eye, my cheekbone, the top of my head, and especially in my right rod in the back of my head.  I just can't stand it.  I can't sleep it off.  I can't make it go away.

Then, there are the usual symptoms related to being upright for too long:
-Pupils are dilated all the time...quite large.  At times, everything seems too bright, since my pupils won't accommodate for light.
-Seeing stars is becoming much more frequent.
-Nausea kicks in at times.
-Dizzy spells including vertigo and lightheadedness
-Being completely out of it, in a haze, etc.

This is despite being in traction most of the day every day.

I'm still exercising regularly to keep my pots symptoms and back pain under control.  I walk on the treadmill of 23 minutes every day, and I do my core strengthening exercises to keep my back and neck strong.  This helps with some things, but not the failed fusion problems.  It reduces my number of migraines, but not my instability headaches.

Today, the pain has just worn me very thin.  I keep crying, because this pain is so incessant, and because I don't want to have surgery again.

Not to mention, I'm still trying to pay off a simple little bill for the consultation in NY in June.  How on earth will I afford this surgery, when I have absolutely no expendable income...ever.

The great news is that they are doing a very new version of the fusion.  Much smaller incision, shorter but thicker rods, longer screws for increased stability.  New recovery protocol to encourage proper healing.  All reasons to think that this surgery should be better than the last ones.

I gotta go.  The pain is too intense.  I just can't handle all of this right now.

But this is the beginning.  The part where you learn to accept that you need another surgery, and it can't be put off much longer.  It hurts, but it will be a lot easier once I can just accept it.  (I should know.  I've been through this before a few times.)

Tuesday, October 16, 2012

October 2012 photos

 Just posting some photos tonight.  The first two are pictures of my scar as it is today.

This picture is not supposed to show my angry face.  Just the normal size of my pupils, even in bright light, a sign of my autonomic dysfunction.

Here's my sweetie and me...wearing my collar, as always.

Whenever I'm not wearing my collar, I'm using my inflatable traction, as shown in this lovely photo:

Here's a shot from my 3D ct scan.  It apparently shows my C-2 screws.  The screw on the left is basically loose.  It doesn't actually penetrate the vertebral body, so it is not secure.  So I really do have a screw loose in my head!!!

And here's a lovely picture showing excessive bone growth.  But basically it's just an awesome picture of my fusion, if you can tell what's bone and what's metal.

I'll post again with updates soon.  Basically, I know I will have this surgery eventually.  I have reason to believe that the revision of the fusion will be more effective this time around.  But I'm going to put it off for now.  More later.