Up and down, up and down

It's the cold, right? Is it the cold? Well, it was 80 degrees the other day, but it keeps dipping down in the 20's. I know, I know - such a wimp.  Maybe not the weather?  Who knows the reason, but I am blue!  And I'm usually not, usually I can see around it pretty well these days...I must just getting tired of it all.  It will be 8 years in this year, you would think I would be getting used to it, wouldn't you?

Today, however, marks the one year mark of my big jaw surgery, my big mistake surgery.  I know I needed it - just did I need it that bad?  And that soon?  And with that doctor?  Long story short, it didn't go well.  A year later my jaw hurts a million times worse, my eye droops, and throughout the day it feels like I am getting shocked up down each side of my face - nerve pain, they tell me.  Not the end of the World but it is getting old.

Every pain specialist, every neurologist, every neurosurgeon, every biofeedback specialist are kind of stooped.  The surgeon claims his job was to open me up, put the implants in, and sew me back up - and since he did that, his job was done perfectly.  He claims that he is not a pain specialist and therefore there is nothing more he can offer me - that is the pain doctor's job, now.  Sugarbean, I have been to many of those and no luck so far.  Last week I went in for nerve block #6, with no numbing or drugs this time (he said it wouldn't hurt that bad and they would stop when they hit the skull).  Four pops right above my ear.  It didn't work and made things worse which was quite discouraging but I have never been too confident that they have been finding the exact nerve to numb.  I just keep feeling they are sticking huge rods and needles in my face kind of shooting in the dark.  Oh how much practicing can often go into the actual practice of medicine.  Doctors are not gods, doctors are not gods I keep telling myself.  There definitely is a God, however, and for reasons unbeknownst (sp?) to me, there is a very real reason I need to experience this pain.

I never wanted this blog to just be a big cry fest - that does no one any good so now on to the positive.  I went to see Dr. Stewart today, the chronic illness specialist who has sworn to cure me.  He is a neurosurgeon by trade but got so tired of cutting people up with no success when it came to chronically ill patients that he turned to science, and well, divine intervention.  We chatted for over an hour today, something nearly unheard of these days, and we are going to try some new things.  They have had some breakthroughs with research and as crazy as it sounds, I may be shipping some vials of injectables in from Belgium.  Sounds nuts but I had a really good feeling about it.  Rolling papers might be next, I tell ya.

Anyway, back to the neurosurgeon part.  He could not believe the attempts that have been made by others on my poor little body - all on the wrong nerves, all the wrong ways.  He marched off and came back with with two realllllly long needles.  Both in the back of the skull on each side of my spine.  It actually didn't hurt that bad (trying having them in your cheeks and hitting the back of the skull),   We shall see if it helps, we shall see.  Bottom line...there is always hope, isn't there.  I think hope might be one of my favorite words these days, actually.

getting on, I mean, to my nerves

This entire year has been revolved around my nerves, my actual nerves, that is.  One of the many things that went wrong in my jaw surgery were some nerves were damaged.  Which nerves, that is, we have been trying to figure out all year.  On each side of my face, from the top of my head all the way to under my ear, it feels like I am getting shocked sporadically throughout the day.

My right eye is frozen (well, it droops over my eye) so we know the facial nerve was nicked but most of the pain was thought to come from the trigeminal nerve (if you are really bored, look it up).  Thus  we have done a nerve block on each side, radio frequency ablation (read: fry the nerve for 90 seconds until it crumbles and disappears, and lastly on the 19th, I went in and did something called a balloon rhizotomy.  They took a huge needle, stuck it through my cheek all the way back to the top of my spine and blew up a balloon at the end of it to 'crush nerves'.  An injection, right?  That's what I thought.  Sure, drug me up and inject away!  I came for my pre-op the day before and learned differently.  I guess this procedure has a tendency to slow the heart down to the point where it can often stop altogether (something about a nerve around the area that is connected to the heart) so they had to prepare me for that.  'Don't worry' - they said, 'we'll use the paddles and start it up again.'  Seriously?

One other precaution they took was they did an arterial catheter.  I guess they take a needle and dig it really deep into your artery so they can get drugs even faster into your system than an iv (although they gave me one of those, too).  They said not to worry about it because they would do it after they put me to sleep.  Okie dokie, do your thing boys.  I remember waking up to them taking that thing out and ouch!  I guess they did some pretty deep digging because this was my arm 9 days later!  Looked like beaten addict.

Well, the procedure sure did numb half my face (felt just like coming from the dentist) but sadly, it didn't touch my jaw or the side of my face.  We tried, though!  I was talking to a pain doctor today who thinks it might be the facial nerve that is causing so much pain and not the trigeminal nerve.  'Okay,' I said, 'numb that then.'  I guess that is not possible, there is no access point to it.

I made one more appointment with the original surgeon on Tuesday to give him one more chance to redeem himself and actually put some effort into trying to help me before I talk to a lawyer.  I feel dirty even typing that but a year of hell it has been and if this is permanent - well, I can't even think like that.

That which does not kill us makes us stronger!