Tuesday, April 19, 2011

A long time...Dog Stool

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Since I've posted anything. I am really good at not finishing stuff. Or getting distracted. Or something.

The husband was diagnosed with a Chiari Malformation (CM for short), (or maybe its an Arnold-Chiari?) about a month ago. I'm sure you have no idea what that is. It's a rare congenital defect of the skull and his kind is going to kill him. Well, it would kill him if not for his super-star neurosurgeon, Dr. Sugarman, who preforms 4 such operations a year.

Most CMs are quite benign and can be managed with physical therapy and pain management. Sometimes there is a syrinx present (a fancy way of saying fluid filled cyst inside the spinal column) and not all cases require surgery. A few CMs are progressive- not only is the skull misshapen, its also pitted and perhaps with jagged edges. When the brain rubs against the skull, the tissue becomes damaged (and you become officially brain damaged). And because you have to be a bad-ass with a rare condition, your brain doesn't just push down a little into the spinal canal, it pushes down a lot! (If you don't know what I'm talking about, you did not click on the link). It doesn't stop slipping-- well okay, it does stop slipping once the brain stem has been crushed enough by the brain to cause your body to stop doing things like breathing or pumping blood).

My husband is a bad-ass. A rebel through and through. He's got that hot shot CM that gives doctors boners. Seriously. In the land of routine and preventative medicine, several doctors have gotten to see something most never see in their entire career. He made these doctors bad-ass by default.

Even I find the science behind it interesting. I'm not sure if it was helpful for me to declare how awesome it was that they were going to take bones from a cadaver and graft it to his skull. But c'mon, a dead person parts are going to be inside of you! It way outshines a blood transfusion-- which frankly I thought was cool to have a part of someone else coursing through my veins in a (Anne Rice, not Twilight--yeech) vampire kinda way.

In a time in our lives when are just starting to gain real traction-- because the husband, me and maybe the kid all seem to march to an invisible drummer boy that no one else seems to hear-- we get this mind blowing news that the husband either has surgery or he dies. So, duh, he's having surgery. Traction turns into a hard braking, slip-slid-ee, pit stop in the middle of a foreign country with no map and no grasp on the language. It took us two days to grasp what we were collectively facing. We went from stressing over the normal financial stuff, parenting stuff and family stuff to stressing over our finite existence.

Now we are talking advance directives, wills and power of attorney, insurances, and social security applications instead of  paying off debt, living simply, future career plans, retirement planning, 401Ks and savings. I'm 34 and never, ever expected to be in this territory at this moment in my young life. Plan for the worst, plan for the almost worst, plan for the moderately okay and hope for the best is my new long ass motto.

The surgery is May 19th at Christiana in Newark. Dr. Sugarman does four of these surgeries a year, which in the realm of rare conditions is a substantial number. We are making plans for the 7 days minimum the man will stay in the hospital, but beyond that we are completely flying blind. We are supposed to get a packet that will tell us more of what to expect, but that packet hasn't gotten here yet. It better hurry up because May 19th is that far off and we are busy. Hell, since this condition is so rare there isn't a lot of good patient info on the internet. There are plenty of research papers and the like, but I'm no neurologist, or doctor (but I probably should have been, except I hate the inside parts shown on the outside).

I am taking the stance that this is all going to be okay, we'll get through it and my husband will live (even if he forgets who I am or some other awful scenario I've imagined). I told him that if he sees a light RUN the OTHER WAY. Do not walk, RUN.

In the mean time, we have things like Easter to distract us... or spend the entire holiday and family time talking about my husbands bad-ass brain and less about bunnies pooping chocolate eggs. Which reminds me-- the husband asked why dogwoods are called dogwoods. The kid responded because its where dogs made their stool. (5 points for not saying "crap", kid!!)

On that note, I'm out.

(and at least now my husband can say "sorry, brain damaged" when he f's up-- and yes, its okay to laugh, humor is the best medicine, isn't it?)

1 comment:

Anonymous said...

Hey, I was just diagnosed with CM this week. I live in Southern Chester County PA and have now had 2 people recommend Dr. Sugarman. sounds like you would too!