So my son’s neurosurgeon retired last week & he was amazing. He had over 22+ years experience and had treated many chiari patients. Our new neurosurgeon I don’t feel is quite up to date on chiari. My two daughters were screened this month per his previous doctors recommendation. My oldest had a 6.6 mm & had symptoms just not the classic headaches though she gets what the call abdominal migraines. My youngest has a 4.75 mm and a syrinx in her lower cervical spine. She’s 2 so it’s hard to say what symptoms she has. When I spoke with the new Dr. she told me she wasn’t impressed with their MRI’s & that they did not have Chiari since you have to have a herniation of 7 mm to have it. All documentation I’ve read says 5 mm & some say as small as 3 mm. She wasn’t even willing to talk to my oldest to investigate further the possibility of other symptoms. How do I politely tell her to get bent & ask for the other neurosurgeon? When I spoke to our previous doctors nurse & told her what she said & the girls sizes & symptoms she was concerned as well. Just need some advice & wondering if any of you have heard of the size 7 rule?
At one point I thought they had a 5mm rule for it to be "significant" but I think that idea was tossed because the size of herniation does not matter per research.
That’s what upset me because in one breath she said it has to be a 7 mm to be chiari & the next breath said size doesn’t matter that you could have no herniation but no flow or a large herniation but good flow.
I have heard of the 7mm rule and also a 10mm rule. I think it just depends on how they were initially educated?? It’s good news that she acknowledges that CSF flow has no bearing on size…but I would be looking at her with one eye half closed. You either believe or don’t believe, right? Call it Chiari, chiari 0, or a herniation - who cares the point is to fix it if it hurts!
Have your babies been screened for Ehlers Danlos Syndrome too? How’s your son doing?
Jenn
No they haven’t but we have an appointment on the 13th & will be requesting it. I am going to have him put in a order for a flow study for our girls. We go in tomorrow morning for his revision. I’m starting to get a bit nervous.
Sending prayers for your son that the surgery is easy and he is soon pain free. God bless you, you must be so stressed out. Prayers for you too momma, and a computer hug. You’ve got an extra tough job right now. Please check in as you are able, I want to hear he is doing well.
Jenn
I'm not sure where you're from, but my NS is in Columbus, Ohio. When he explained the herniations and the sizes, he explained it in a way that there really is no "minimum herniation." He said that people who have a 10mm herniation can have no symptoms, 100% CSF flow and live a normal life. But a person with a 1mm herniation could have a major CSF blockage, headaches, and other neuro symptoms. He also said there is so little that is truly known about the diagnosis that to put specific numbers on it is the wrong way to go about it. Even though you've been with the practice for a while, there's no reason you can't seek out a new doctor. Don't feel obligated to stay just because you've been there for so long. Ask for the images (not just the readings) for all the family on CD's and then see what else is out there. If a doctor is trying to write you off or basically pushing you to the side, you need to find a new doctor. You are important and they should make you feel that way. Sending much love! <3