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.