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

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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.

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5 Replies

  • Posted

    My sister has chiari and most people from what i hear that have chiari are much better off after having decompression surgery. She waited till she was an adult and that just made it worse.
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  • Posted

    I'm so sorry your child has this, I would arm yourself with as much information and questions as you can, even 2nd opinion.. I was asked if I can live with it, I won't require surgery, but I didn't have many symptoms till I was an adult then had surgery.. Some are good after it but I have side effects such as dizziness, bit nauseous on a morning and a numb head.. It's 3yrs since my op.. The surgery is to prevent the condition getting worse.. But it may be causing more complications with your son. There is chiari 1 and 2 and 3 the higher the more serious.. Yes there isn't a lot known about. Just make sure your consultant has a good knowledge of it. Hope all goes well, God bless xx

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  • Posted

    I'm pretty newly diagnosed as a 40 year old adult. I've consulted with a neurosurgeon and it basically comes down to not needing to rush into surgery until there are symptoms I can't live with. It's a quality of life issue. From what I've read of others' accounts, there are plenty of complications that can result from the surgery so I can't fathom a reason to rush into it. Again, I'm pretty new to this all so take that into consideration. But nothing I've come across says any CM type 1 is life threatening so I'd definitely seek a second opinion before taking my child into surgery.

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  • Posted

    Remember everyone is different. I have this also. I have never had any problems since diagnosed. Mine was found when I had to have surgery on a brain anyersm 9 years ago. My doctors have never did follow ups. Go with your gut. Don't let them push you. Also, You have a right to another opinion. So I would have a different nueroligist check him out! Good luck to you and your son.

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  • Posted

    I think I would get several different opinions.  Also, check out different educational websites.  I'm 62 and had the surgery at 60.  I have a lot of problems before and after the surgery.  I have a 5 year old granddaughter and I know this is terribly hard emotionally for you to deal with.  Chiari Malformation UK Facebook has a lot of knowledgeable people and they can probably give you some good insight.  I hope things work out for your little one.

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