What questions should I ask neurosurgeon about my son's case?

[AchtungCloud]

Hi,

My son is 5 years old and he has a Chiari Malformation. All we really know about it is that he acquired it when he was about 2 weeks of age. We have had him since he was 2. At ages 2, 3, and 4 we got yearly rapid MRIs and were told by the NP at the neurosurgeon's office that we will just continue to get yearly MRI's and watch him for symptoms. This year, they decided to do a full MRI which required sedation. The day after that, we talked to the NP, who said the neurosurgeon had yet to look at the results, but that she thought we would continue the yearly MRIs. I mentioned during our conversation that our child does have Central Sleep Apnea. Later that afternoon, we received a call from the office saying we needed to come back two weeks later and have him get an MRV. After the MRV, they told us they want us to come back after the school year and have an ICP Monitor placed for a time period ranging from a few minutes to 72 hours. Based on what the ICP Monitor shows, they would then decide if they want to do a Chiari Decompression surgery the same day.

We feel like this is a really rash choice because they had previously told us he wouldn't need surgery unless he became symptomatic, and now they are saying he needs the surgery. I think they are considering the Central Sleep Apnea, which he has always had, but we just recently told them about, as making him symptomatic. Other than that, he has no symptoms. No headaches, stiff neck, etc.

Also, the more I see these forums, the more I feel like we are uninformed about his case. Apparently, there are multiple types of Chiari Malformation, and they can be measured somehow by CM?

So what I'm looking for is what information I need to get from the neurosurgeon to become more informed about our son's case before we decide whether or not to have an ICP Monitor placed and/or decide to get the decompression done.

I'm guessing I need to get what type he has, current measurements, if the year to year scans show any change in the chiari malformation, why is he considered symptomatic, why can't they do a Cine MRI instead of an ICP Monitor, and I'm not sure what else.

Thanks.

[selmaS]

Hi and welcome to the Chiari forum.

First let me ask you about the fact he acquired Chiari at age two....how? Or is that when it was first noticed?

Next why do they consider him symptomatic...Sleep apnea is a condition that can be caused by Chiari....so do you know if he has obstructive or central sleep apnea?

Those with Chiari can have symptoms but because they have always had them consider them "normal" because they have always had them....and may not consider them a symptom or something to report to anyone until they worsen

Make sure the Dr is a true Chiari specialist and not just a NS....this is key.

[AchtungCloud]

He acquired it at 2 weeks old, not 2 years old. He was a shaken baby.

I believe they consider him symptomatic because of the sleep apnea. It is central sleep apnea. He used to have both times, by getting tonsils and androids removed got rid of the obstructive type. He doesn't complain of headaches or stiff neck, has good balance, and it's actually difficult to get him to not do things they want him to avoid like front rolls and the like. He has really good memory, as well.

I don't think his doctor is a true chiari specialist. He is just the NS who had placed and removed his shunt after he was shaken as an infant. He was already a patient of this NS long before we adopted him. Our son's insurance is traditional Medicaid, so to get a 2nd opinion from a true specialist would almost definitely be out-of-pocket for us. Which obviously, if we need to do that, we will, but we were hoping to avoid at the current time.

[selmaS]

I had both my tonsils and adnoids removed when I was seven....and I didn't appear to have issues with balance or things like that when I was younger...seems to worsen with age....

Ok I am following now the age and time line....sometimes I have to reread things several times to understand what I read.....other times I ask questions and look like I can't read at all....

If you can get a true Chiari specialist to review his info, I would strongly suggest it.