Is it just sleep apnea?

[ldaiga]

I was diagnosed with sleep apnea back in June, 2006. For more than 2 years I have been using an auto cpap machine (settings 8-14) with a variety of Swift nasal pillows (LT is great!) During that time I showed improvement, but with all kinds of problems: restless legs getting worse, sleep anxiety, and a dull pain at the base of my skull, which I attributed to the strap. With adjustments I coped. But there were other issues: dizziness, imbalance, loss of muscle tone in my thighs, and the dull pain got worse and developed into severe headaches, to name a few. I went to an ENT and they found nothing unsual. I went to a neurologist for the restless legs, and complained about my other issues. He promptly ordered MRIs on my spinal chord and brain.
The diagnosis was Chiari malformation or a herniation of my brain stem into the top of the spinal chord. In my case with all of the other problems, I needed an operation to open up the area of compression in the back of my head. This took place October 2nd and I am now slowly recovering at home. Unbelievably, my sleep has improved sooooo much since the operation. I still use the machine, carefully placing the strap above the incision area. My restless legs are improving. I recently looked back at my sleep study and noticed that I was diagnosed with 1 obstructive apnea, 84 centrals, and 132 hypopneas. However, they said the thoracic belt was probably defective so they didn't trust the result of 84 central apneas. Really??!! I am now hoping to slowly see some improvement with the sleep apnea and restless legs. Time will only tell. But I do feel better. I am writing this to make you aware of the fact that there could be other issues involved with your sleep apnea, especially if you are having complications or that the apnea is not totally improved.
This has been such a wonderful forum for exchange of information, and I would like to add my two cents worth with this experience.

[Bonnie]

That's a lot to go through. Here's to a speedy recovery and hopefully when you're back on track another sleep study might be in order. Do you have a data capable machine to see what's going on yourself? Seems like the surgery has helped and I'm happy for you that you see improvements. Congratulations on staying with Cpap and I hope you have continued success.

[kteague]

Thanks for the update and for sharing your experience. Another reminder that sometimes there's other things going on that cpap can't fix. If you do get another sleep study after you fully heal from your surgery, please do let us know the results.

Seems Arnold Chiari Malformation is more recognized in recent years. I had a coworker who has it, and it causes her to have migraines. A young lady I've watched grow up struggling with debilitating headaches had the surgery a few years ago. My 11 year old grandson was diagnosed with it a few years ago, when he kept getting excruciating headaches. We were told it remains to be seen as his skull develops if it will improve or get worse.

Wish you a speedy recovery and continued great strides in regaining your health.

Kathy