Do any babies with Chiari 1 Malformation not exhibit symptoms?

Wendy - posted on 04/25/2010 ( 5 moms have responded )

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We just found out April 16th that our son Carson has Chiari 1. The original reason he had an MRI was b/c he has a bulging fontanelle (slight). Our ped told us he would request a ultrasound just to be safe even though he did not have any of the symptoms that go along with it. The US showed enlarged ventricles, thus the MRI. They said he had benign macrocephaly. In the meantime they discovered the Chiari. We are seeing a neurosurgeon in May as our ped said he could explain it better. We were told that there does not seem to be any need of medical intercession, but are praying the neurosurgeon concurs. The only thing we see that might be related is that he spits up a lot compared to our other children at his age. Does anyone know what the sphere of symptoms are for Chiari 1 or are they just that varied? We do not know the mm measurement at this point although from what I gather that makes the diff. What measurement is normal for a Chiari 1 diagnosis?

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Jennifer - posted on 04/29/2010

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symptoms are very varied and somewhat dependent on degree of herniation, but not necessarily. Many children/infants can go a long time before symptoms show or are noticed. In retrospect, our son had symptoms from birth but because the are so varied, they can be mistaken for other diagnosis, especially "run of the mill" ones. Unfortunately there's no normal measurement because a child with minimal herniation can exhibit a multitude of symptoms, or none at all.

Dawn - posted on 04/28/2010

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My son has a 8-10 mm. He was having sever symptoms to spitting up, diff. walking and balancing, stopped talking, sever headaches, mood changes, ear infections, sever GERD, you name it! He was only 6 months when this started. He would hold his breath until he would pass out and stop breathing. I have read that if it is under 8 mm and No symptoms then they just watch the child! Good luck and please any questions please message me! My son is 2 1/2 now and almost 1 yr after his decompression surgery! He is doing wonderful! Just delayed in speech!

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Wendy - posted on 05/13/2010

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The neurosurgeon says he think everything will be okay, but he wants Carson to have another MRI in a year to make sure nothing has changed. Praise God! He said the only thing odd was to find it this young, but then commented that normally you would not be doing an MRI at his age. He even said his enlarged ventricles were only slightly enlarged. Of course, he said to watch for any symptoms, but other than that he said to be optimistic.
In the excitement I failed to ask him about the mm and whether we needed to keep him from particular activities when he gets older and more mobile.

Jennifer - posted on 05/01/2010

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Josh was herniated to C3. He had his surgery Dec. 2006, at 6 years old. The first few days are rough like you wouldn't believe, on the child and parents. Josh had the added issue of food allergies, and had a reaction to the meds to control swelling. But he did great considering and was discharged after 3 days and rapidly felt better being home. I would suggest that you get one of the U-shaped pillows...my son got one with Spiderman on it. The are perfect for when they want to lie on their backs, the surgical site fits nicely in the U without adding pressure. He was out of school for 2 weeks, would have been 3 but Christmas vacation took up the third week. He was back at gym and recess with few restrictions by March. He did have tethered cord rear its head and that was released a year ago, Josh will say that the surgeries and recoveries were hard, but he says he is so glad we did them. It has been such a turn around for him. He still suffers from extreme headaches once in a while as well as back pain. He can tire easily and the neuro said he'd probably always have some issues. As he was significantly herniated and tethered, there was some nerve damage that won't heal, but we were told if he didn't have surgery he could have ended up wheelchair bound. If you need any help, information....whatever, please don't hesitate to post. As you said, you don't want others to have this, it is nice and comforting to know you're not alone.

Wendy - posted on 04/30/2010

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Thanks Dawn and Jennifer! I hate that anyone has to experience this same issue, although it makes it easier to feel we are not alone. We are hoping to get more info from the neurosurgeon including the mm. Our son has been spitting up even more the past few days, but teething could explain that as well. When he is crankier than usual, he stops when held, so spoiled or something else- who knows. When they can't say what hurts there is so much uncertainty anyway at this age!

My husband and our oldest son (currently 7) have terrible headaches sometimes and upon discovering Carson's Chiari, we started wondering if it is genetically passed and perhaps he is not the only one in the family with it.

How long does it take for healing after decompression surgery and do they have to relearn things they already mastered?

Thanks again!

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