My three year old son was recently diagnosed with chiari malformation. His MRI report reads that the herniation is 1 cm. This is the largest herniation that I have heard of or read about, yet I was told by his neurologist that his case is "mild". Needless to say, I have strong doubts about this doctor's diagnosis and am in the process of getting a second opinion. Is there anyone else with a herniation of this size, especially in that of a child?
1cm oh my that sounds large for an adult let alone such a tiny little thing. Oh I bet the poor babe suffers. Breaks my heart. In my opinion nothing abnormal is mild in a child. And to me that sounds anything but. What is up with NL. I have completly lost my faith in that speacialty.
Poor baby! 10mm = 1cm so that is quite a bit! Mine is 16mm and I'm miserable most of the time so I couldn't imagine being 3 and having chiari symptoms! But as Selma always says...it's not how big/descent down it is...it's the symptoms and other problems it can cause from being overcrowded or CSF blockage!
As in... Someone with as few as 4-5mm may be worse off than me at 16mm! I pray your little one is ok and don't develop some of the other conditions!
May I ask what symptoms he is experiences?
I would defenitly find a true chiari specialist to look at your child and run all the proper test that needs to be done! I'm sorry your son has this dx and I hope we all can be a support for you. Keep us posted.
Yes 10mm is a large herniation, but if it is long and thin and not blocking CSF then it may not be as crucial for the dr to move forward with a major surgery.
Picture this ( I am stealing this from CW)
The spinal cord is a drinking straw....the 10mm herniation is the thickness of a strand of hair.....it is not causing a CSF blockage.....however, some one with a 4mm herniation has a thick tonsil....like a stem of a rose..it almost fills the straw with no room for fluid to pass, it is not large, but also is very wide....
Size of the herniation is not the factor here....fluid blockage, overcrowding and symptoms r.
U deff need to see a true chiari specialist to be sure he does not have a syrinx, tethered cord or other related conditions.
hello!! i agree with your decision of a second opinion. i was just recently diagnosed with a 1cm chiari as well..it is very frustrating knowing there is something wrong but be ignored. i pray your son to get the answers he deserves and treatment :)
I am not sure that the poster u replied to is an active member....but, I agree with ur comment...we do need to get more then one opinion many times it is just to make sure the Dr is experienced with chiari, but u need to find several and compare them , and when u r not sure about the treatment that is offered, seek another opinion.
U may want to start a new thread as this one is 2 yrs old and may not get the replies.....and it will get noticed more as a new one....
I look forward to learning about ur chiari journey.
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