Chiari Malformation

[jsussina]

My son is 4 Years old and diagnosed with obstructive and central sleep apnea.  When at a sleep study with cpap and bipap machines it made his central apnea worse where he was having severe central episodes with blood oxygen levels dropping into the 50-60's.  He was ordered an MRI and they discovered Chiari Malformation 16mm.  We live in Buffalo NY and saw a surgeon who wanted to perform surgery.  We want to get a second opinion from a Dr. in Rochester NY.  We were wondering if anyone had any experience with a Pediatric Neurosurgeon in the Buffalo area, and if you had anything to say about the Dr we saw, Dr. Veetai Li?

[selmaS]

  Sometimes it can improve, Chiari affects all aspects of how our body works, so that can be breathing, our heart rate, pain, just about nething can be affected.,

I know a few that were on C Pap b4 surgery and were able to step back to a less invasive way to oxygenate the blood post op....one had surgery post op and not sure if they still use the C Pap or not, but they had some of the soft palette removed as well as tonsils and adenoids....

So like nething else it depends on the type of  apnea, as there is obstructive and central, and complex (mixed)......and we r all diff, so for some this may resolve and for others it may begin post op....

[irislita]

One question selma.should sleep apnea improve after decompression?why do we have sleep apnea?

[selmaS]

  I went to have surgery with one of the top chiari Drs...knowing the NS did not work with ins, BUT they hospital and staff did, so what I had to pay out of pocket was not more then going with a Dr that works with ins...it can work out...talk to the billing office and ur ins carrier.

I am just stressing to go with a Chiari specialist....and I can not speak of the Dr u asked about, I have not heard nething regarding him and chiari b4....but I do not know all the Drs out there, u will have to go with ur gut, if this feels like the right dr....

This can be a diff decision, and it sounds like ur DS needs surgery regardless of the CSF bcuz of his breathing issues....

  ((hugs))

[jsussina]

Thank you for your response.  They want tot do a CSF check but because he is so young they have to put him under again for the MRI so the NS suggested just doing it before the surgery, because he said no matter what he would want to do the surgery.  So we are limited to him because of our insurance right now, and the Chiari Institute doesn't take our insurance, and this is something our family just cant afford without insurance.

[selmaS]

  Hi and welcome to the Chiari forum.

The only NS's that have Chiari experience that I know in NY are at The Chiari Institute in Long Neck NY......u want a true chiari specialist not just a NS....

Chiari and sleep apnea do o hand and hand not sure y, and many find the Chiari first and never look for the apnea, so it is good they found it and are aware how it responds to treatment.

Did they do a CINE MRI to look for a CSF obstruction?...Were syrinx's ruled out? Tethered cord, ehlers-danlos, ICP....and a few others al should be ruled out. B4 surgery is considered,