Chiari Online Support Group

Sleep apnea study experiences

My son went for his sleep study last night, they’re telling me it’ll take about 2 weeks to get the results. They used an airflow sensor on him and you could hear him breathing. At times, quite often, he’d stop making sounds, then start again. When we were leaving, I asked the guy that helped us if that meant he stopped breathing. He gave me this look and said, I wish I could tell you, but I’m not allowed. So, I’m waiting to get the results. This will be the main factor in whether or not he has his surgery so young. Had anyone been through this? Does it sound like he’s stopped breathing, from your own personal experience? I know only a doctor can tell me this for sure, but I’d like to know if anyone has been through it. I witnessed him gasping for air and choking twice, which is why we got this study, so I’m not very hopeful. I’d just like to hear others experiences with the study. Thanks!

I have a 5mm chiari and I have complex sleep apnea, which means I have central and obstructive apneas. I’ve probably had both since childhood but was never diagnosed back then, sadly. Glad that you’re catching this early. You might want to get his hormone levels checked as I also have low testosterone which can be caused either by the sleep apnea or by the chiari directly. The good news is that sleep apnea is very treatable with a CPAP machine. Make sure you find out if his apnea includes any central events, where the brain stops sending the signal to breath. If that’s the case he needs a special CPAP that has an ASV feature to force him to start breathing again if he does have central apneas.

I was diagnosed with sleep apnea in 2009. I would wake with a startled effect. I tried the
CPAP but couldn’t tolerate it. I was told I stop breathing 33 times a minute. I had Chiari decompression 2014. Surgery had no effect on the sleep apnea. Good luck.

That’s unfortunate, I hope his will. They couldn’t get an accurate reading because they were in there every few minutes fixing his equipment. They only caught it twice and noticed his legs were a little restless. He has to have the surgery, I just found it yesterday, so we’re going to redo it after he recovers.

  If your son has sleep apnea,  the sleep study test should find that out.   

    I had two sleep study tests done because at one time, it was thought that I had sleep apnea.  The only thing the tests could proove was that I was 'popping out of' delta sleep 90 times an hour.  (Delta is the deepest sleep).  In otheI could r words,  I was never making into deep sleep.   But, the tests couldn't really confirm whether it was because of airway blockage from sleep apnea.  (!)   So confusing!

   When I was diagnosed with Chiari's,  the sleep problems made a little more sense.   The brain stem is what regulates your sleep cycles - it tells your brain when to go to sleep  - and it's the 'spark plug' that wakes your brain up in the morning.    When something like Chiari's compresses the brain stem,  things like sleep can go catywompus.  I could never go to sleep, and I could never really wake up  (I was diagnosed only with Chronic Fatigue Syndrome 'cuz I was SO lethargic all day.)   Once my brain stem was decompressed,   I'm able to be so much more alert during the day,  and can reach delta sleep no problem.  (Does still take me hours to fall asleep, though.)  

    Sleep apnea can still be an issue, though.   Chiari's is usually caused because the skull is genetically too small for the brain mass... thus the 'ooze' out the bottom.   If the skelatal bones are too small,  then it could logically seem like the cervical bones, jaw bones, etc... might also be too small!    (for example,  all my life, I always had problems with overcrowded teeth.  Always was having teeth pulled because there was no room for them.   Seems like the whole lower part of my skull was too small for everything that was supposed to fit in there!)  That could be the case for your son.     

        IF sleep apnea is the real problem,   I am told that the CPAP will help almost immediately.    I tried the CPAP machine for 10 months, and it never improved my sleep one single iota.  I was still not getting any delta sleep.   I've talked to lots of people who have genuine sleep apnea airway blockage , and they've all told me that within days of using their CPAP, their sleep was improved dramatically!
      So, I hope the tests will be of help to you!

Oh wow, that’s very helpful information. We’re going to have another one after his surgery to see if this helps or if he will need something to help him sleep. I’m not sure what they can do for a cold so small,I don’t foresee him keeping anything on lol.

 Poor little guy!  When is his surgery?   The gasping and gagging noises you hear do sound ominous - like there actually is some kind of blockage.   Sleep is so important!  Hoping and praying this will all turn out very well.

Sorry it took so long to reply! He had his surgery this morning. He did great, we’re having a rough time now though. But that’s to be expected I suppose.

I had a study done n never fell asleep. They told me I had it. I had the machine but I would wake up at night not able to breath with it on. I ripped it off my head one night n never used it again. I will never use one. That was scary.