sleep study?

How many of you, (or your childrern) who have been diagnosed with chiari were asked to do a sleep study? Doing so seems so logical to me, yet neither of my three year old son's doctors have suggested it. I am so frustrated at their lack of urgency about his case!

[selmaS]

Hi...this is a bone of contention right now in chiari circles...

Does ur DS have sleep issues?....do u know if he wakes up gasping?

This is something u should push for...it is not on the list of to do's for a chiarian and should be.

I know we have a few that have been dx'd with sleep apnea and r on C-pap machines.

Keep pushing for what u know ur child needs.

"selma"

[redkim]

The night of my surgery in ICU, my husband woke me in a panic because the machine went off because I stopped breathing.  I told him I have sleep apnea, some days worse then others.  I just did the sleep test last weekend and it came back negative.  She told me to be considered to have sleep apnea you have to stop breathing 15+ times an hour.

I asked to be tested, and am glad I did.  I ended up having to take the test twice, the first night I could feel my self waking up and not breathing, but a cord came unplugged so I had to do it again and slept fine the next night.

I have had several tests that have come back normal, and it's frustrating because I know something is wrong.  I just keep pushing, and you have to keep pushing too.

[dpulum]

I had a sleep study done as part of assessing my CM.  My study was pretty inconclusive.  I'd never slept well, since childhood, so I think they just wanted to check it out, although I do sleep better since the surgery last Fall, although I don't really know why.

Sorry not to be more help.

[ploink]

Yes, I have had several sleep studies before I found out that my vocal cords were dystonic and way before I ever was aware of Chiari.
My vocal cords were continuously squeezing together, tightly closing off the airway whenever I was not consciously and forcefully compensating and pulling the airway open.
Obviously, I did not sleep very well... I did not sleep very well for most of my life.
I think it was about 18 years ago that I first wondered if it was normal that the airway closes when you relax. I know now it is not.

The sleep studies reported that I did not have sleep apnea. It was not until I requested the data that I found I did have 15.6 arousals/hour and only 9.3% REM sleep, while 25% is normal. If anyone has sleep study results, I am very interested in your REM-sleep%.

I wake up gasping for air regularly, but I found out that in my case it is not due to hypoxia, but it is hyperventilation. It starts in my dream when I feel like I am suffocating. I start breathing heavily, gasping for air and panic because I cant wake up. But after a while I do and then the hyperventilation stops soon after.

I used to sleep without relaxing, in a very tense way. I realized that part of my conscious brain just never sleeps because it is assigned the job of pulling some muscles to keep the airway open. It is a little like sleeping standing up.
Things improved quite a bit since I got a tracheotomy.

Here is more info about sleep apnea and chiari:
http://www.conquerchiari.org/subs%20only/Volume%205/Issue%205(3)/Chiari%20Sleep%20Apnea%205(3).asp

[ploink]

Oops, I have trouble reading and concentrating sometimes. Your question was about offering sleep study after chiari diagnosis. But perhaps my contribution is still usefull ;)

To answer you question, if you suspect sleep apnea you should definitely ask for a test. Doctors are reluctant to do any test unless you give them a good reason. You have to steer them and push them in the right direction or they dont go anywhere.