Blogging again?

Well, friends, I thought I had put my blogging days behind me.  But I find that as I am possibly entering into a new phase of life, I may need a place where I can refer people for the news about me and my situation without having to repeat myself over and over again.  (Not that I don't want to talk to each and every one of you, but it gets tiring to tell the story more than once or twice.)

So, here's the deal.  As some or most of you reading this may know, I have what's called a Chiari Malformation.  Basically, as I like to joke, my brain's falling out of my head.  I've known about it for several years.  Three years ago after hearing the words "15mm out of your skull" and "surgery", I entered a lovely phase of denial.  After a great deal of research about the surgery, I knew I wanted nothing to do with it.

Fast forward to December of this year when my two-year-old nephew and my sister were also diagnosed with Chiari.  I went along for the visit with the neurosurgeon.  He pulled up all three of our MRIs and talked to us at length.  My sister opted for the surgery for the baby, and it went well.  He's progressing nicely now.  When the neurosurgeon looked at my MRI, he took a step back, and said, "Whoa.  I can't believe you're walking around."  He pointed out that both my cerebellum and my brain stem are out of my skull, causing significant blockage of spinal fluid.  Also, the top vertebrae is turned and poking directly into my brainstem.  He advised immediate surgery.

But I would have none of it.  The point was, to me, not what I saw on the MRI, but that fact that I AM up and walking around.  So, why mess with something that's working, even if I am having some symptoms?

Fast forward to the past two weeks.  Symptoms have progressed, and I started falling down.  So, I guess I can't flaunt the "but I am walking around" thing anymore.

Went back to the neurologist this morning.  He looked at the MRI from 3 years ago, and I got another.  "Whoa."  (P.S. you never really want to hear that from your doctor.)  He said that surgery was warranted 3 years ago, and there is a good chance that the situation has gotten worse.  So, in two days, I'll be having more MRIs done to check the position of my brain, and check spinal fluid flow, and to rule out the possibility of a syrinx (a pocket of spinal fluid stuck in the spinal cord).  After that, I'll probably meet with a neurosurgeon to discuss my options.

When I asked the neurologist this morning what would happen if I didn't have the surgery, he replied, "You see this little bone poking into your brain stem?  At any time it could cause blindness, paralysis, or stop your breathing."

So, is it too late to go back to denial?