Chiari help

[hunny97]

I was in a car accident in April 2012 I went into the ER because I was having this terrible headache in the back of my lower head, my neck and shoulder hurt and I felt like I had vertigo and I wanted to throw up.
I had a CT scan done and was told that I have: Mild tonsillar ectopia present, borderline criteria for Chiar-1 malformation.
Because I was dazed out by the pain meds I was given I really didin't understand when the Doctor told me about the CT scan and the findings, I remember the words said CHIARI, if you haven't had terrible headaches and neck pain before boy your going to now with a little laugh he gave, the ER doc had a sense of humor so I thought it was nothing.

I went to a chiropractor to get adjusted and I told him about my headache and neck pain, I also told him that i had a CT scan that I wanted him to look at and tell me if it's ok, boy was I wrong.
He said oh yeah you have a mild case of chiari and people get them all the time (headaches)  but if you follow the plan (8-10WKS) we have for you to get better you won't have it anymore ( A bunch of BS)
I seen him twice and I called it quits the pain got worse than better I woke up with a stiffer neck, my headache became stronger then I started to get these weird symptoms that are different daily.
My PCP told me not to go to the chiropractor anymore.

My headache is so bad it starts in the back of my head goes up to the top and I can feel it in my eyes and nose.
I can't sleep, my neck hurts so bad I don't want to move it, then my hands and arms starting feeling weird, im hearing this irritating ringing noise in my ears that I want to stab. I can't even talk right I have half of the thought and I want to say it but can't, now my family thinks i'm on something, and ive been peeing like crazy I thought i was prego again. I have other symptoms that come and go and now i'm at the bottom of my rope I want to know if i was born with this? or did something happend from my car accident? Is this all in my head or what?
Thanks for reading...

[sherimom]

My son was actually diagnosed around age 8  or 9 as an "incidental finding". I was told no big deal unless he has symptoms later on. I had no idea of what it meant.

He began wrestling in high school and his symptoms worsened. Looking back, I can see now when he was much younger, some of the "odd" things were probably chiari related, but I had no idea then. He ended up having surgery and did well for awhile, now having some issues again.

I work in corrections, however I'm not the one with the chiari. I'm a probation and parole agent and it seems to me less physical than correctional officers - just something to consider. It's not a job with NO risk, but here it seems less risky to me.

And someone mentioned getting a copy of your CT scan. Great idea - I always ask for a copy and since they are digital now, they usually just burn the CD for me at that time. I ask the doctor for the written report when we see the doc for results. I now have many CD's for my son, it was helpful in going to new doctor as I had all the info already.

Good luck!

[linnielou232]

I'm so sorry that you have to hear this news in this way.  Now that you know you have it I recommend you ask for a copy of the CT scan and schedule to go see a specialist who deals with Chairi.  We all have been on our own journey's and some have been hard and long.  I wish you the best in finding answers, but you don't want to go to Chiroprator any more because this could make it worse.  
Linda :)

[selmaS]

  I can not say for certain  how ur Chiari will affect u, but u may want to consider other positions, corrections officer may not be the right type of job as it can be too physical and u should avoid that as it too can trigger symptoms.

There are many and I do not know #'s that were born with Chiari and never even know they have it...they may have a symptom here or there, but it may not worsen to the point  urs and mine have.

One Chiari Dr said 1 in 100 has Chiari...while 1 in 1000 has MS.....I am not sure if this means DX'd or the # that actually have it, if it is DX'd then that means there r a lot more of us out there.

  To ur being disabled, there r no guarantees with surgery, and until u know what other relates issues u may have  that may affect how u feel and heal post op....some of these other conditions may cause set backs with the healing process... so make sure u have a chiari specialist and r checked for all related issues.

[hunny97]

Thanks so much for your reply and helping me understand what Chiari Is..

I went to the urgent care before going to ER but they said they couldn't see me because I had a bad headache and was nauseated along with body pain. I was advised to go to the ER.
I'm so thankful for the ER Doc who requseted a CT scan on my head, because I would have never known I had this problem. I agree with you 100% when you said that MVA triggers Chirai. I'm getting tired of the pain and different symptoms that I deal with daily, I'm also fustrated that there isn't a cure for this...
Do you know how people with Chiari manages their sypmtoms? How bad is going to get? I'm in school to be a corrections officer do you think Chiari will become worse to the point that I will be disabled?

[selmaS]

  Hi and welcome to the Chiari forum.

So many have had a MVA trigger their chiari symptoms to worsen or to be so active they could not be ignored.Since chiari is congenital many of us adjust to the symptoms and consider most of them "normal" as we know no different....until it comes to a head.

Chiari can be acquired as a result of an accident, but it is not really Chiari, Chiari is the malformation of the skull, leaving it smaller and this forces the cerebral tonsils onto the brain stem and spinal cord causing the symptoms.....in a MVA, the force of the accident can force the tonsils down to where they may obstruct CSF....but it is possible for the tonsils to retract, or post op these patients recover better then those with related issues or have had them over a longer period of time.

A true chiari specialist should be able to tell u if urs is chiari or low lying tonsils and acquired chiari.

It is possible to have congenital chiari and not notice the symptoms until u have a fall or sneeze hard, or r in a MVA....sometimes we have no idea what triggers the symptoms to worsen...but when they do, we begin to realize just how long we really have had this.

I hope I am not confusing u on the diff types.

A chiro will make this worse and is not advised. No manipulation of ur neck is advised for those with chiari.