Chiari Malformation Community
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Quote chiari malformation Unquote

I don't want to be concerned.  I don't want to see my child endure more testing.

I wish I could feel comfortable with the answer given to me today.  By a doctor, I was told QUOTE chiari malformation UNQUOTE,  this 7 mm herniation wasn't anything to worry about while according to the numbers it is a chiari malformation.  He doesn't feel any of the symptoms we're experiencing are related to the chiari malformation type 1.

We have one more appointment to go and I'm hoping after having both opinions, we'll feel comfortable and who knows ... maybe the next doctor will say the same thing.

Oh, by the way, they said the small amount of fluid on the brain is not a hydrocephulus but a macro crania.

Still confusing around here!
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620923_tn?1405964489

  Hi...it is easy to find Drs that will tell u what u want to hear, and u can continue to be confused too...the best thing I can suggest is be sure the NS is a true chiari specialist.

This is conjecture and opinion and unless the Dr is doing research and focused his practice on chiari and chiari related conditions u may not get the right info.

  Not knowing what symptoms ur child is dealing with and how severe they may be it is hard to know what to advise, but I would have more testing to rule out related issues like a syrinx, and a CSF obstruction......

    "selma"
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1874051_tn?1321500769
Thank you.  It's so tough.  My child is only 1 year old so since he can't verbalize his symptoms, we're only going off what we see and experience.  Today's physician is sending us for another NS opinion.  Nobody has mentioned looking for related issues and there seems to be discrepancy as to even how big the herniation is and so far, everyone is saying it is mild.

We just want to know what is wrong with our baby and how it is going to impact his life and how to best help him, what treatments if any are needed.  

It seems like we're being told to just watch him.  If that is correct, then great!  I just need to know beyond any doubt that just watching is good enough and the right thing to do.  We haven't seen a NS that "specializes" in chiari although all say they've seen it and one said that 5% of the population has chiari but most don't know it.  

I don't even know what answer I want to hear.  I just don't feel "comfortable" yet with what is being said especially since opinions have bounced around on us.  I greatly dislike feeling confused and am trying daily to gain more knowledge so I'll know best how to help our little guy.

Thanks for taking the time to chat.

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620923_tn?1405964489

  Since ur child is only 1 and can not verbalize...do this, check for a CSF obstruction, and sleep apnea....

  These are 2 of the more important issues and since ur child can not tell u when there are new symptoms these are the ones that will crop up and cause the most problems.

  Does ur child also have GERD? Developmental delays?

    "selma"
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1874051_tn?1321500769
Thanks.  He does not have GERD.  He does have Developmental Delays.  We just had a sleep study done so that should tell us if there's any apnea.  I will ask everyone about the CSF obstruction.  Would that have been visible in the CT or MRI or is that a separate test?

Thanks!
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620923_tn?1405964489

  It is a CINE MRI also known as a flow study.

Some Drs can see there is an obstruction with out the CINE MRI, but it is not always possible with out the real time pictures to see ....

An example...if u take still pics in a reg MRI u may see CSF flow and think it is fine, but in a moving video u may notice that the tonsils pulsate with ur BP,....so it is a diff story with the CINE.

   "selma"
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1179332_tn?1297482590
Hello

Sorry to intrude but may I ask what type of delays your son has? Is it fine motor skills  Does he have trouble with drinking and swallowing?

Some of those are classic symptoms that children will present with with Chiari.

There have been some of these things with my youngest son but not too "abnormal- within the low of the normal range" however some of the things I see and the stuff they pointed out are very similar to the difficulties I experience.

I really hope that you will be able to find a pediatrician that has some experience with this!
Stormy
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1874051_tn?1321500769
Thanks for the csf flow info selma.

Stormy - it is not an intrusion.  

We are concerned for our little one.

Delays include eating differently with textures, not doing well with straw or sippy.  Is in ot.

Does not tolerate loud noises.

Taps head.

Two months ago he was saying words everyday and now no words, just noises.  Was playing little games and giving kisses.

Does not sleep well.

Am told the chiari is asymptomatic.  Just worried about our little one as something is causing these things.

Thanks.

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1179332_tn?1297482590
The eating difficulties does sound familiar though I think with my son it is to a lesser degree. He is seeing an OT right now too along with a PT and a swallowing specialist. One thing the swallowing specialist pointed out is that he seems to have a bit of a core weakness, his hip muscles are fairly weak making him quite flexible and he braces himself when he eats (either by moving his feet around or having an arm on the table).

I am really sorry to hear that for your son that things have seemed to go backwards (with the speaking) that must be really difficult. I would not believe anyone who has told you that Chiari is asymptomatic...I was told the same thing once even though I could barely walk. I found a NS that felt differently, had the surgery and now my gait is 80% improved!! I'm not saying that surgery is a cure but it helps..

My advice would to keep looking for a Dr that is willing to be more open minded. As a parent, I wouldn't rush into any kind of surgery with my child so I am not saying that it was I think you should do BUT if Chiari is the problem then getting a specialist in that field will be a start in the right direction.

My prayers are with you.
Stormy
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