chiari and syringomyelia but NO symptoms

[Quinten399]

My 12 year old son was just diagnosed with a 5mm chiari and large syrinx pretty much from the top of the spine to the bottom.  However, he has NO symptoms whatsoever.  The pediatric NS recommends surgery.  Is there anyone out there with similar condition but NO symptoms?  We discovered this quite by chance.  I would hate to have surgery if it can be avoided but I don't want to put him at risk down the road.

[selmaS]

  Hi and welcome to the Chiari forum.

  I have to ask, how do u know he does not have symptoms, the reason I ask this is bcuz if u always have something u look upon it as normal and would not respond to the question do u have symptoms from this with a yes....such as pain with strain to a child or a adult for that matter would not think oh that means when I have a BM those sharp head pains r not normal even tho  I have always had them...they do not consider them...and say no....

The right questions r never asked if u ask me....
Ur child should be asked- do u like to jump, take gym class, swing on a swing, hang upside down, walk on a balance beam, etc....
Do u get head pain blowing up a balloon, making a BM, lifting something heavy, carrying something up steps,

...how do u feel when the weather changes, seasons change...

  u may be surprised as well as ur child to find that some aches and pains r not normal to have, but most people do not discuss them so how would someone know...if u always have it, it is normal to u, and u compensate for  it...so ask how often ur child evacuates waste...sometimes they may get in the habit of holding it bcuz of pain.....they need to go daily.....

And my last point on pain....if ur son has a nerve  that is affected that he can not feel the pain, then that is not a good indication.....

How this is affecting overall health is what u need to look at...is he tired a lot- check for sleep apnea....

I am curious, by what chance did ur son require a MRI to find this? Something must have been going on?

   "selma"

[Quinten399]

Thanks for the quick response.  We brought him to his doctor to have an x-ray performed on his head because of a small indentation he noticed himself.  Although he had no pain associated with it we wanted it checked out.  They did an x-ray and CT scan when they noticed the possible chiari.  We then went to a pediatric NS who did a complete head and lumbar MRI and discovered the syrinx.  Both doctors said the indentation was not anything to be concerned with and has nothing to do with the chiari.  

We spent hours with the NS who performed numerous sensory tests and lots of time on questions and answers.  Quinten rarely complains of a headache and maybe has a high tolerance for pain.  I will say that we have always had a problem with his bowel movements.  He will go for days without one but when questioned why he waits, he has never complained that it gives him a headache, just that it hurts coming out.  We've tried stool softeners but getting him to take it is another problem.  It's not so bad now, he goes more regularly and I have to remind myself to ask him.  He rarely complains of discomfort unless his little brother is around him, LOL.  He is a very active child.

[selmaS]

  Hi, no worries.....keep in mind no pain can be the result of nerve damage and that can be permanent ....

The bowel issue can be an absorption issue....especially if he has ehlers-danlos....those with is can have  issues with absorption of vitamins and minerals and the water needed to help move the bowel thru the track gets absorbed  and the bowel hardens making moving it painful.....ask his drs about probiotics which help  balance out the digestive track.

  Depending on the size of the syrinx...u may want the surgery to help shrink it so it relieves pressure on the nerves.....if this goes on too long it  is not reversible...so do get another opinion from a true chiari dr and see who u feel  comfortable with.

    "selma"

[itsy1]

Selma, I wish every doctor who deals with children could remember what you just pointed out:  if you've always had something going on how would you know to tell someone?  

Fwiw, Quinten399, I had Chiari symptoms and didn't even know it 'till I saw a ns at 18.  I thought everyone had ringing in their ears and the sensation of being rocked to sleep when they laid down each night ~lol~.

I'm sorry y'all are going through this.  I agree that a second opinion by a chiari specialist might be in order.  They have a good list of specialist going on this board.

[jenniferk86]

Please do remember, and this is not always the case that as Selma has mentioned that a syrinx is serious and can cause lots of pressure and damage to the nerves of the spinal cord which controls the entire body.  He is 12.  If the chiari is causing the syrinx and is going to make it worse and you leave it alone, and the doctors think it will get worse, there is a possibility that leaving it will leave him with permanent nerve damage that cannot be reversed later when you decide that ok, now he has symptoms lets do something about it... or if god forbid it gets to the point that he wakes up and cannot move his legs because a syrinx can cause paralysis and quadriplegia, then you decide that its bad enough at that point, surgery will not reverse paralysis.