Slightly Off Topic - Headaches

Often on here we read of those whose OSA treatment appears to be therapeutic but still suffer with various symptoms, and the advice is always to consider there may be other contributing health issues yet undiagnosed. I'm throwing this out there for that 1 in 1000 that may benefit from this information.

Got a call from a friend today. We'd been out of touch for a while, and since we last talked one on one, she'd had surgery. I remembered her having debilitating headaches and other neurological symptoms, but tests over much of her adult life had not found a cause, so a lot of maybes like migraines, fibromyalgia and carpal tunnel were thrown around. After finally being diagnosed, very old scans were compared and the answer had been missed. She had Arnold Chiari Malformation, where there is crowding at the base of the skull that can inhibit the flow of fluid between the brain and the spine.

To me this is another example of when one radiologist reading any scan is simply just not enough. The irony is that the friend who called me today is a physician (pediatrician), and she has experienced the same frustrations as any other patient. She has a son with a blood disorder and had to fight for appropriate handling of his case too. I lost a friend to lung cancer in his 30's, and when comparing old xrays, the spot was there years before, when surgery could have saved his life. Makes you just want to scream.

But back to Arnold Chiari Malformation, I know that Wikipedia is not the bottom line for medical information, but their description of symptoms surprised me. I didn't expect sleep issues to be listed.

By the way, this is not all that rare. My grandson was diagnosed with a mild form of it at about age 9 and they are waiting for his skull to finish growing to see if it resolves or worsens and needs intervention. A friend's adult daughter had surgery for it a few years ago. And a coworker had severe headaches from it. So that's four just in my circle. From all I've read, like OSA, ACM is largely undiagnosed.

Ok, that's my FYI of the day.
Kathy

Thanks for posting that, Kathy. Here's one interesting view about Chiari Malformation:

article linked below wrote:The prevalence in the general population has been estimated at slightly less than one in 1000. The majority of these cases are asymptomatic. Chiari malformations are often detected coincidently among patients who have undergone diagnostic imaging for unrelated reasons.

http://www.neurosurgerytoday.org/what/p ... hiari1.asp

Whew!

And how about a trip down memory lane:
viewtopic.php?f=1&t=25332&p=219065&#p219065

Thanks SWS for the link to the old topic. I vaguely remembered the prior discussion of ACM when my grandson was diagnosed and I had read that central sleep apnea can be present and wondered if anyone here had it.

The trigger for today's post was the reality and frustration of missed diagnoses and the merits of 2nd opinions. Since so many people here experience headaches, you just never know...

Man, you've got a good memory!

Kathy

kteague wrote:From all I've read, like OSA, ACM is largely undiagnosed.

That's why I'm totally addicted to Cpaptalk.com' .... Just can't get enough of all the good advice !
Just yesterday I asked myself: Who invented cpap - well, I looked it up on internet and found it. Invented in 1981 by Colin Sullivan, MD.
It's never too late to say: Thank you, Colin Sullivan !
Now I make a point of it to tell family and friends about OSA - hopefully they, from their side, will tell their friends - this way we help other possible sufferes.
How about a T-Shirt with the following printed on:..... I'm a HOSEHEAD.....get diagnosed and stay healthy EVER AFTER !

go to http://www.asap.org and get lots of info about Chiari . sleep apena is a symptom