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MRI report of 11 year old son says Chiari Malformation type 1
Yesterday I got the MRI report of my 11 year old son. Finding were a Chiari 1 Malformation. Tonsils lie 15 mm below the foramen magnum. I was familliar with the condition, because my aunt got that dx over ten years ago and had the surgery. However, it is a little harder to take when it's your child. I am waiting on the call from my neuro, she read the report, but wanted to look at the MRI herself before giving her opinion. He has been sick since Jan 18th with some flu like virus that has yet to get a dx. He is finally better, but the bad migranes continue and that was the reason for the MRI. He has been worn out, having bad headaches, and running a low grade temp for months now.
Thanks! As far as my Aunt goes, she died at the age of 50 in Jan 2009. After the surgery she still was in alot of pain. She got her diagnosis after having dizzy spells, falling alot, and having bad headaches. She was in a bad wreck a few years after the chiari surgery, had to have two knee surgeries and ended up on disabillity. She was a very intelligent woman, but the pain caused an addiction to pain killers, and it ultimately caused her death.
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Oh I am so sorry, my deepest sympathies. It shows that Drs just did not and still do not know that much on how chiari affects us......
Too many Drs just want to pass off pain meds to us, then admit this is more then they can handle.....
We are sick again with Flu like virus, only better about 3 weeks. Is this related? Does Chiari contribute to bad sinus infections, weakness, mood swings/irritability? WE were back to infectious disease dr yesterday with more blood work. So far last 3 blood test have given us no answers. The Chiari dx is the only thing they have found in 4 months of testing.
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Hi and welcome to the Chiari forum.
I can not imagine having ur child have this, yet that is all I can do when a member is talking is t5o try and imagine what it might be like.....I know what it is like to have chiari and I know I had the symptoms since I was was a child, but was not able to get a dx until I was an adult.
I can tell u, u r going to give him yrs of knowing what is going on....that has to be a comfort....not knowing is very diff, and u get all kinds of labels....
Finding a true chiari specialist is key....getting testes done to see if he has a CSF obstruction and over crowding...then u look to symptoms...he should avoid certain activities to help prevent further damage, and triggering the symptoms more.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
The link to our list of Drs was included to help with ur research of drs.....not meant as a referral.
There r many tests to rule out conditions with similar symptoms.....like MS, lymes, lupus, sleep apnea, Ehlers-Danlos,POTS,intra cranial hypertension,tethered cord.....
Research is still ongoing as to how and why some get chiari, but it does appear to be genetic....may I ask how ur Aunt is doing 10 yrs post op?
We r happy to have u join us here, but we r not happy with the reasons that bring u.
"selma"