Several years ago, I began to get headaches. I went to see a Dr. Greenfield in Annapolis who ran a battery of tests, including an MRI. The test detected a minor Chiari Malformation –about 3-4mm. A referral to a Neurologist did some further tests, but found little nerve damage. He figured my headaches were migraines, and I learned that they were made worse by chocolate and soy.
So that went on for a few more years. However in the spring of 2010 I started to have more symptoms. Tingling in my extremities got worse, headaches got more frequent, and my vision seemed to deteriorate. But far and away, the worst syptom was an increased “fogginess.” I seemed more often confused, and my memory started to give me problems.
I saw two more doctors, a general practitioner and a neurologist, before being referred to my current neurologist.
He ordered another round of MRI’s, and did a number of nerve tests. It turned out I had carpel tunnel, and he blamed that for the tingling in my extremities. Although the MRI showed that my Chiari herniation had elongated to 7-8mm, he didn’t belive that it was the root of my cognitive problems. Instead he believed that I might suffer from sleep Apnea.
A sleep study proved him correct, and I began to use a CPAP machine to keep my airways open while I slept. Oxygen deprivation during sleep causes brain damage (and is associated with a number of health problems), and it was hoped that with time my syptoms would reverse.
So far, as of November 2011, I have seen some improvement. A course of physical therapy and a number of excercises have made the tingling and numbness a rare thing. The headaches have nearly disappeared – I can even tolerate some soy and chocolate! But the cognitive problems have been more stubborn.
They seem cyclical, and I believe they have improved somewhat, but my memory issues seem beyond what I could expect at my age.
I have most recently undertaken a more extensive series of cognitive tests in order to benchmark and identify the issue.
Needless to say, I have fears over things like early onset Alzheimers (although without a family history, it is very very rare.)
I find out next Tuesday.
Additionally, I am wondering if the CPAP is not as effective as it could be due to my mouth opening at night (I’ve read this can be a problem) I’ve ordered a chin strap in hopes that this helps. I’ve been using a bathrobe tie to keep my jaw shut the last few nights, and it seems to help keep my AHI numbers down.
Anyhow, I read about the difficulties many with Chari have, and my heart goes out to them – particularly the kids. Even on it’s worst days, my own chiari is far from debilitating. For some folks, it means not being able to walk, work, or really function.
Strange to think how your brain drives your whole life, that you really aren’t more than the firing of neurons and such. Lack of oxygen and/or restricted CSF fluid might undue some of my thinking, but I'm going to put some of my modest resources toward charities that work on Chiari. If our brains are nodes in part of a larger collective mind, I'm going to put mine to work as part of the immune system. Addled or not, I can become part of my own cure, even if it happens long after I'm gone.
