Chiari Malformation

I found the news article featured in today's streaming news interesting and was wondering if we have any forum members with Chiari Malformation and if they have central sleep apnea. I guess what I'm wondering too is if it only causes CSA if severe enough for the brain stem to prolapse or if it's just crowded.

I know 3 people with this condition. One is my elementary aged grandson, who is considered to be mild, and we have to wait until his skull finishes maturing to see if it gives him more room or worsens the crowding. He just has suggested limitiations regarding high impact activities. The second was a coworker who is affected mostly by migraine like headaches. The third was in such severe pain they had the surgery to cut away some bone on either side of the back of the skull, but they still have incapacitating headaches. She feels so bad so much of the time, I'm wondering if she's had a sleep study.

Any one in our readership with a CSA/Chiari Malformation connection?

Kathy

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CPAPopedia Keywords Contained In This Post (Click For Definition): news, CSA

Hi Kathy
Strange I had never heard of this condition before but this weeks extreme home makeover edition concerned a mother & 3 daughters who nave it. The family lives in Montana & the Mother is the head of some sort of foundation who serves others who have it.

Interesting
Chuck

Chuck,

I saw the commercials for that episode and wondered what the family story was, but then missed the show. Shucks. I'll do a little online snooping and see what's out there - the show's web site should have some info.

As far as it's effects, even though my grandson's condition is mild, sometimes his activity causes the flow of the cerebrospinal fluid to be hindered and he gets a pressure headache so bad he cries and begs for silence. Can't imagine what pain a severe case would cause.

Kathy

I was recently diagnosed with central sleep apnea. I was diagnosed with Chiari Malformation and syringomyelia in 2001.. I wanted to know if the cpap can help with central apnea or just the obstructive type?

Oh.. I also read tht 80 % of people with chiari malformations have csa.. Interesting.. I am very new to this and not too happy to wear a cpap if it won't help.. Does it work for CSA??

typicalfam - I don't have any personal experience with them, but there are sophisticated machines I think called vpaps that serve as ventilators and can detect a central apnea and breath for you based on your breathing patterns it has identified. I think anything less than that machine could potentially cause you more problems. Hopefully someone experienced in this will chime in with more specific information.

I have read about your particular diagnosis. Best wishes in finding a treatment that helps you get the best sleep possible.

Kathy

You can find more info by looking under 'Arnold Chiari Mal..." rather than just Chiari.

typicalfam - Do you have a copy of your sleep study results? It's possible you have both CSA and OSA. Do you already have a machine or is it something you are looking into? I think if I had CSA and there was a machine made for my condition that would give me a degree of security when I slept, I'd be very interested in using it. Because of how specialized your diagnosis is, you do need a doctor who is knowledgeable and will not treat you with standard cpap therapy. And they need to be willing to help you understand your options along with benefits and risks.

Kathy

Hi, I have Chiari Malformation and was just diagnosed with Severe Central and Severe Obstructive Sleep Apnea last week. I go for my second sleep study tomorrow. I just found this site and it has already answered questions I had plus has given me valuable information. I have other health problems as well. Fibromyalgia, Syringomyelia, IBS, Social Anxiety Disorder, OCD, Major Depressive Disorder, Degenerative Arthritis, Chronic Pain... That's all I can think of at the moment, there may be more. I was also diagnosed with CFS but now with the apnea diagnosis I'm not sure if I really have CFS? I forgot to ask my doctor.
Anyway, here are my Meds: Zoloft, Xanax, Restoril, Dilaudid, Exalgo, and Neurontin.

That is the medical quick look at me.

I am 33 years old. I am disabled and sleep so much it's not funny. Somehow I manage to get my 13 year old son to and from school every day. I have a very loving, supportive husband. I should be on the PTA, going on trips with my family, riding on the back of my husbands motorcycle, taking yoga classes etc. All the things I want to be doing but can't because of my pain and exhaustion. It's so very frustrating. I'm grateful to have found this site. It gives me hope that maybe someday I will be able to do normal activities at least once in awhile. I would like to hear from anyone who has Chiari Malformation, or any of my other health issues, as well as everyone else on here. Nobody in my own world understands what I'm going through. They try, but its still not the same.
Thanks for listening...er reading. ^..^ "Kat"

typicalfam wrote:Oh.. I also read tht 80 % of people with chiari malformations have csa.. Interesting.. I am very new to this and not too happy to wear a cpap if it won't help.. Does it work for CSA??

A regular cpap machine will not help. You will need and Vpap or ASV type of machine. Do a search on the forum for threads about these.

BlackSpinner wrote:

typicalfam wrote:Oh.. I also read tht 80 % of people with chiari malformations have csa.. Interesting.. I am very new to this and not too happy to wear a cpap if it won't help.. Does it work for CSA??

A regular cpap machine will not help. You will need and Vpap or ASV type of machine. Do a search on the forum for threads about these.

Yes, you will need a good ASV titration (not all sleep labs are capable of doing these) and probably an ASV machine. Look for posts from johnbfisher or pm here. He is extremely knowledgeable and willing to share information.

I have also just come across info correlating Chiari Malformation and fibromyalgia, interesting...