Brain Injury

In light of a disturbing article I read today about a woman who complained of headaches for a very long time ~ she was constantly dismissed ~ then she passed away ~ I looked into the definition of a brain injury. I feel like I have been on the sidelines for a while now, neglecting my blog and my readers and I am trying to get back in the groove and post some helpful info out there on the web. Here's a good link for symptoms of a brain injury broken down by parts of the brain. This is the piece that really grabbed me:

Brain Stem: deep within the brain

•Decreased vital capacity in breathing, important for speech.
•Swallowing food and water (Dysphagia).
•Difficulty with organization/perception of the environment.
•Problems with balance and movement.
•Dizziness and nausea (Vertigo).
•Sleeping difficulties (Insomnia, sleep apnea).

Cerebellum: base of the skull

•Loss of ability to coordinate fine movements.
•Loss of ability to walk.
•Inability to reach out and grab objects.
•Tremors.
•Dizziness (Vertigo).
•Slurred Speech (Scanning Speech).
•Inability to make rapid movements.

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Seriously, I think it's safe to say that many of those still apply to me. I still have to remind myself daily that I have a serious brain malformation that caused irreversible damage/injury to my brain, and with high intercranial pressure and cranial settling, it continues to server up good doses of pain and destruction. Seems like the brain stem is really stressed out by the cranial settling ~ all I can do is wait for my bones to dense up ~ is that even really a word??? get more dense, that's better.

I am thrilled that Chiari is making the headlines more and more ~ the general public is getting an education on Chiari Malformations, but the stories are breaking my heart! Please, if you or someone you love is complaining of constant headaches, encourage them to find a doc who will give them so concrete answers.

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!

Barometric Pressure Headaches ~ still

They say it takes about a year to be healed from a brain decompression and here I am thinking I feel pretty good so I must be healed already ~ until I get whacked with the stealth barometric headaches again. My surgical report did state that I had absolutely no flow at all in my 4th ventricle prior to surgery. The decompression restored the flow to that of the 'jet stream', but I wonder how much time I must wait until the pressure headaches are gone. Maybe I will always be plagued by them due to too much damage from 38 years of ventricle squashing in my brain?!

I was reading up on what causes these pressure headaches. I must fall into the category of 'weather sensitive' individuals. There is a feature on http://www.weather.com/ where you put in your zip code and it will tell you on a scale of 1-10 what the Aches and Pains index will be for the area where you live. They are predicting a 6 for today and a 7 for next Monday. This might be a good idea to keep track of when planning activities for the week ~ to not expect much when the numbers creep above 5. But then again, I usually can tell at least 24 hours before the pressure is coming.

Maybe those ancient memories ingrained in my DNA about sailing across the ocean serve me well. I would have been be very handy on a ship since I can tell if there's bad weather coming ~ sigh. Now where's my Excedrine Migraine medicine?!!