Nasal Drainage - Chiari ?

[bean418]

Has anyone experienced nasal drainage prior to being dx with Chiari?  

Not the average runny nose drainage, but as if a steady stream of water coming from a faucet.

I received a "theory" from a NS yesterday and curious if anyone has experienced this.

Thanks !

[selmaS]

  Yes....and I was asked to try and collect some in a container, but that was not possible,.,,,we thought it was CSF....I also had it for a time post op, but it has since resolved.....I do get it on occasion which leads me to believe it was not CSF,.....but more likely a sinus issue as the sinus cavity is in tight quarters and that area is made tighter by the chiari. JMHO on my own issue

[selmaS]

  Not sure I could say,...all I know is the space is smaller...hence many with Chiari say they have "too much brain to contain"...the brain appears larger bcuz the space is smaller....

I am sure a Chiari specialist could point it out to u....it has been almost 5 yrs since I was to one so that part I know, but not enuff to show on a MRI or nething like that....

But the smaller  skull  forces the tonsils to herniate....and obstruct CSF flow.....

[bean418]

What does the malformation look like ?  

[selmaS]

  Chiari is not the herniation, but a malformation of the skull....u can have low lying tonsils or a herniation with out the malformation so not a true Chiari, but the same symptoms.....so, if u have the malformation u have congenital Chiari...if u have a normal skull with low lying tonsils u have acquired Chiari.

Many with congenital Chiari also had full lives and were able to do much more prior to the symptoms worsening....we just adjusted to it and considered it "normal" since we always felt like that...never realized they were symptoms.

[bean418]

Or....a doctor in Chicago.  I believe it was something like Hefz.  Don't remember his name.  

Appointments are too overwhelming for me.  Trying to communicate 3.5 years of symptoms and tests in 15/30 minutes is too much.  I am surprised I don't hyperventilate in their offices.

Not sure how I would be able to tell if I was born with it.  No prior MRI's before that date.  No medical records at all before that date.

If I had to guess.  I would venture to say that with no medical history and being able to do the things I used to do prior to this....I have acquired it.

I was always on the go and had the energy of a 2 year old which could run circles around anyone that I knew.  

Now....not so much.  Complete opposite.

Was watching movies the other day of daughter and was sad at the difference in then and now.

Mind boggling !

[selmaS]

  Oh....I have heard that name b4....will have to review some older threads to refresh my Chiari brain....lol...

Not really, I have had this odd sensation on my left arm...up near my shoulder....at first I thought I might have shingles the way it felt...it comes and goes, but no rash so not sure what it is....

Many that have the burning sensation tend to have a syrinx, and that is one thing I did not have,.,,

Getting ALL vitamin and mineral levels where they should be can help with many symptoms we tend to have.

[bean418]

Weingert @ JH

Everything resolving, lol.  I believe nothing anymore until I see it.

Have you ever experience burning skin sensation.  If so, what location.  I have it in my thighs.  Originally this was thought to be a B-12 deficiency.  My level on that is at top range....so, it's not that.

[selmaS]

Aww thanks for the kind words.....and yeah we do seem to have a lot in common huh?....lol...

Well a injury can also cause the tonsils to herniate and knowing if urs is congenital or acquired is something u want to know.....sometimes an injury can trigger symptoms we grown accustomed to to worsen and stand out more....so it is important to know which u r dealing with.

Not sure I agree that ALL problem may resolve with surgery...again, that is just bcuz I have yet to see that happen for  neone...usually something remains, but it is sooooooooooooo much better post op then b4.

May I ask who u were referred to?

[bean418]

LOL....ok.  Glad to hear someone else experienced this issue.  Did your drainage start when you became symptomatic?

I ask this for the following reason.  When I had the trauma to my neck, every morning when I woke, my nose would run like a faucet while sitting up.  Thought it was the strangest thing.  Months later when primary's could not dx anything I went to an ENT.  

This ENT was concerned, like your dr., and requested that I try and collect it.  He gave me a tube like one you would collect blood in.  Unfortunately, I was unable to collect it.  He commented that when collected he wanted to have it checked to see if it was CSF fluid.

Since then any other dr. disregards this as they probably assume it is just a runny nose and being exaggerated.

Went to another NS yesterday.  After taking a history.  His theory is as follows.  The neck trauma caused a small spontaneous CSF leak which resulted in the cerebellar ectopia (herniation).  

WOW....someone that actually makes a comprehensible statement regarding this entire mess.

Referred to a NS that specializes in Chiari.  He will call him personally to discuss the situation.  Can not guarantee the other NS will perform surgery however believes that if the surgery was completed that all problems would resolve.

Sounds great !

Anything that remotely sounds like "common sense" sounds great at this point.

Selma...it is so funny that we have lots in common.  Certainly, many people with the condition do but when I post a ?, your responses are
outstanding.