Brain Tail Comparison ~ One Year Post Decompression

Sorry I have been remiss in posting about my one year post decompression doc appt that I had back on 1/29/10. I have attached MRI photos of my brain ~ the one on top is the current one and the one on the bottom was taken when I had a herniation of 17mm back in September of 2006. There's a tiny bit of cerebellar herniation but not enough to write home about ~ I love the proof that they actually removed my top vertebrae and a big chunk of my skull and you can clearly see it in the image.

This past visit with my neurosurgeon was not very highly anticipated ~ in fact it was quite the bitter pill to swallow. So here's the positives first:

• I am doing well enough to hold down a full time job


• I am functioning at a pretty high level


• I can care for myself without needing any assistance

And here's the rest of the story:

• My neurological functioning has actually deteriorated a bit since May of 2009 ~ I flat out failed a couple of my neuro tests that day. You know the one where you stand with your feet together ~ hold your arms straight out in front of you and close you eyes ~ well I immediately fell backwards.


• Failed to walk heal to toe without falling off the invisible tight rope


• Confirmed that I have stenosis


• Confirmed that I have degenerative disk disease and will probably need disk replacement in my back at some time in the future


• Chiari headaches are more frequent again


• Vertigo is back with a vengeance


• Don't forget the brain fog from hell

With that said ~ I have finally surrendered to modern medicine and am committed to taking Diamox to see if it will get my chiari headaches under control. ~ SIGH~

I have mixed feelings about my condition ~ yes, I have Chiari and even with two major surgeries ~ to prevent any further neurological damage I still have symptoms. I am learning to be at peace with this ~ enjoying the days that I feel good and to not be so hard on myself when I feel like I've been run over by a really big honkin truck!

The Power of the Butterfly

Since I am having a hard time walking without falling over walking on the treadmill has been out of the question. So in an attempt to hold onto the smallest ounce of sanity in my life I have started swimming again. We are members of a family health club that has an awesome heated indoor pool and it's been a pleasant surprise that my brain tail allows me to swim.

Ever since I was a little girl I have loved the water. I have come a long way from swimming for the Briargrove Barracudas at age six. When I was a teenager I lifeguarded and taught swim lessons. There is something incredibly satisfying about working with a child who is terrified of the water and to watch them fall in love with swimming!

For most people, swimming translates to putting on your bathing suit and bobbing up and down in the water. Not me, I can't get into a body of water without breaking out in a full fledged racing butterfly stroke ~ I just can't help myself! Muscle memory is a powerful thing ~ I don't know if I will ever completely understand it ~ but I love swimming the butterfly stroke and it's permanently emblazoned in my memory. It is probably the most complicated and physically demanding stroke to swim.

My shoulders have always been semi double jointed and swimming butterfly

feels so good to me. Probably thanks to Ehlers Danlos I have a greater range of motion. So ~ for now ~ I am happy that I can workout and feel strong and healthy if for at least a little while.

I'm Trying To Find It

My youngest daughter's birthday was yesterday. Since things have been super busy around our house, I had waited until the last possible moment to purchase her gift. So ~ I had a two hour window between dropping her off at cheer practice and picking her up. Time was of the essence.

Apparently these little fur balls are the latest craze ~ on E-Bay there were 91 items listed! I went to three stores ~ no Fur Berries in site. I was quickly running out of time ~ I was going to have to break down and actually talk with someone at the Customer Service desk as Toys R Us. I was desperate ~ they heard my plea for help ~ One of the employees scoured the store and came back with the one, lone fur berry left in the store. I was saved ~ I had found what I was looking for and the look on my child's face when she opened the gift was priceless! BTW ~ since the guy that found the toy was Phil ~ we named the Fur Berry 'Phil', too. Awe ~

Not only was this a successful mission, I discovered that even though my brain is falling out of my head, I can still drive at night and find where I am going. All it takes is some time and a lot of turning around. You see, I can't see that well at night ~ I am hoping that after my decompression my vision will improve. So driving at night, looking for a store with a vague address can be a total setup for a stressful event.

But ~ I had a mission and tried to stay focused. The more I drove around ~ looking for the toy store, the more turned around I became. I would pass the street I should have turned on, so I would take a left, turn around and then turn left again instead of right ~ talk about short term memory! I just had to laugh at myself and pat myself on the back for being out there to begin with.

So ~ note to self ~ next time ~ let someone else drive!

Miss You Like Crazy

We all have brain farts ~ it's our human nature ~ we have become avid multi-taskers. The result of this is a little short circuiting every now and then. Some go so far as to boast about how many tasks they can do at once ~ think The Cat In the Hat. That used to be me prior to my brain tail taking up residence in my spinal cord!

I digress ~ They say a mind is a terrible thing to waste ~

An 80 year old couple were having problems remembering things, so they
decided to go to their doctor to get checked out to make sure nothing was wrong
with them. When they arrived at the doctor's, they explained to the doctor about
the problems they were having with their memory.

After checking the couple out, the doctor tells them that they were
physically okay, but might want to start writing things down and make notes to
help them remember things. The couple thanked the doctor and left. Later
that night while watching TV, the old man got up from his chair and his wife
asks, "Where are you going?"
He replies, "To the kitchen."
She asks, "Will you get me a bowl of ice cream?"
He replies, "Sure."
She then asks him, "Don't you think you should write it down so you can
remember it?"
He says, "No, I can remember that."
She then says, "Well I also would like some strawberries on top. You had
better write that down cause I know you'll forget that."
He says, "I can remember that, you want a bowl of ice cream with
strawberries."
She replies, "Well I also would like whipped cream on top. I know you will
forget that so you better write it down."
With irritation in his voice, he says, "I don't need to write that down I can remember that." He then fumes into the kitchen. After about 20 minutes he returns from the kitchen and hands her a plate of bacon and eggs.
She stares at the plate for a moment and says, "You forgot my toast."

The sad thing about this story is that I totally identify ~ makes me feel like I should be in a padded room when I can't remember a thought I had just 2 minutes ago ~ what was my point? I know I had one? What I can't wrap my mind around is how devastating Chiari has been on my mind ~ seriously ~ I wish I was joking!