Tuesday, February 9, 2010

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!


E said...

But you do all with such grace, Lacie, that it's easy for me to forget you have chiari. You are an amazing woman.

Lisa said...

Lacie. Congratulations on your 1 year anniversary. You made it this far. You are still here...Thank God! I'm sorry that you were confronted with some sobering news. At least maybe you can face these issues "head-on" (pardon the pun!) and get them resolved when they happen.

I too have had to learn to celebrate the good days and lay low on the bad ones. I don't like it, but have learned to accept the fact that I need medication to function.

My myelopathy has very similar symptoms to stenosis, so I know what you are going through. I'm still learning that I have limitations.

You and I are alike in that you can't see our pain from the outside, which makes it hard for others to understand. We look like normal human beings to everyone else. The craziness that is going on inside doesn't show. I'm not sure we would want it to!

Just know that I am thinking of you and that I "get it". :)

Luv ya!

shalunya said...


Thanks for blogging about what can be a very challenging condition. For me, I've found a sense of peace in writing about my Chiari. It's so challenging because we are faced with not just the Chiari but multiple conditions causing a plethora of symptoms. Wishing you health and happiness.


youngwife said...

Thank you for sharing your condition with so many. You are an inspiration and a wonderful testimony to the Grace of God!

May the Lord bless you and keep you!

Rebecca Young

(Mom to an amazing Chiarian, my daughter, Rachael!)

Lori said...

Beautiful blog! I am a fellow chiarian and was wondering if you would be willing to add me to your chiari blog buddies. Here is my blog: mychiaribooboo.blogspot.com

Thank you for your consideration and good luck to you.