My 6 year old son was just diagnosed with chiari malformation last month. They found it in a ct scan because he had been running fever, blurred vision, and a severe headache sfor two weeks after he was hit in the head by our front door while playing with his friend. He has an appointment on August 6th with a neurologist they already did an MRI to confirm it and I guess see how bad it is. My question is what will happen next? What are the symptoms of this? I know nothing about it. I googled a little bit about it but where did the fever come from?
Those are all pretty common symptoms of a concussion. For most kids they appear in the first week to ten days and take up to 3 months to fully resolve although its not unusual to take a year.
What will happen next is likely nothing. Chiari is a very common defect. Most people don't even know they have it and most are discovered while looking for something else. Fewer that 10% ever need treatment. If he hasn't had symptoms up till now, it isn't likely given the way children grow, that there will be any for several years. Most likely they will watch and wait.
There is a lot of similarity between chiari and concussion symptoms. It may take a while to sort it all out.
They did a ct to check for concussions is what they said and they said there wasn’t a concussion. He’s always had headaches. I have three children and he’s the only one that has ever had headaches and ran fever for no apparent reason. Are they able to play sports?
Heather sorry i noticed i posted my number on here instead of email. You can delete and call me. TJ1 is right. I will give you more info.
Thank you
Hi, we had a similar experience last month with my 12 year old daughter who had been having intermittent dizziness (without headaches). As part of the work-up, she was found to have a Chiari malformation on a brain MRI. The next step was an MRI survey of her spine to see whether there was a syrinx within the spinal cord. The spinal cord has a small duct running down its center. A syrinx is a small dilated area of this duct (a fluid cavity) and can cause some symptoms, like limb weakness, in patients. Though they don't really know why, syrinxes are associated with Chiari. Anyway, our daughter was found to have a tiny syrinx. The next step was to consult with a local (Chicago) pediatric neurosurgeon with a special interest in Chiari. He recommended a "watchful waiting" (i.e., see ya in 6 months) approach. We then consulted with a local neurologist with a special interest in dizziness and a long history of treating Chiari patients. He had the same recommendation. Anyway, we're pretty early on in our Chiari journey -- so these are words from a newbie.
Also, I would doubt that your son's fever is related at all to the Chiari. Finally, I've attached something that I found from a Chiari clinic. It's a bit clinical, but really well written and reasonably balanced. Hope this helps. Best of luck.
42-Chiarihandbook.pdf (3.02 MB)
Heather / Jozy, we do recommend that members use the site email to communicate so, Jozy, I am going to delete your phone number to protect your privacy.
Hope you do hook up by email and can offer support.
I concur with TJ1 – concussion symptoms can be very similar to Chiari. Unfortunately, there’s no good test (including CT) for ruling out concussion. So I agree it might be a bit before your son’s symptoms get sorted out.
Heather, my son also has Chiari with Syrinx and was diagnosed at 14mos old and he is now 5. His Chiari was pretty bad and he had to have several surgeries. We were immediately sent to a pediatric neurosurgeon that specializes in Chiari after his MRI findings. I urge you to seek an appointment and consult with a pediatric neurosurgeon that specializes in Chiari. That should be your first step. A neurologist isn't going to do justice with a Chiari. Your son has all the classic symptoms, my son did and still does to a point. I can research some Chiari specialists in your area if you'd like.
Hii Heather,
My son had chiari surgery just before he turned 9. He was diagnosed about 9 months prior to that. He had "headaches" on the top of his head. Hard to call them headaches, really just an intense pain lasting, usually, less than 2 minutes. Initially, he said drinking some water helped. But after a while that didn't work. He would be crying. We used to put an icepack on his head to help alleviate the pain. He first got these headaches when running around at recess at school. Later that changed to when he went from lying down to sitting up. My neurosurgeon was not initially convinced that the headaches were from the chiari , but once the headaches were brought on by positional change, he felt they were chiari produced. You can find a lot of info on the internet, try Google Scholar, but the main problem is that Chiari is very unique to the individual in terms of prognosis. You can't say because Chiari symptoms progressed or didn't in person A, then person B with the same size chiari will follow the same progression. By the way, size and symptoms do not correlate. It took us a lot of soul searching to decide on surgery, but so far so good.
Hi Heather
My son also has Chiara - just letting you know you are in my thoughts.
Not sure where the fever fits in as nobody seems to mention that.
Headaches yes.
Just don't rush into anything - think about it before you commit to surgery.
Remember your child was born with it and you never knew about it.
Gather information before you think of doing any surgery.
In South Africa, they say surgery is only an option when they are older as the symptoms come back - and even worse.
They suggest you leave it as long as you can.
Don't child tell your child too much and down play the symptoms otherwise he will become paranoid
Hope I have helped a little bit.
LOVE VANESSA