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Chiari Malformation Community
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Avatar universal

Chiara malformation for 12 year old.

My daughter recently participated in a medical study for healthy children and I just received a phone call telling me they saw a chiari malformation. As far as I know, she doesn't show symptoms outside of the occasional headache which I always thought of as normal. It's early evening, so no one to call to get more info. Can anyone. Give or oint me in any direction?
10 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Since ur DD does complain of HA's from time to time there may be other issues she deals with and adjusts how she does things to avoid feeling them, but chiari is congenital from birth, so if u always have a pain doing a certain activity u can assume it is "normal" and everyone gets it and u don't say nething....as a child I would get a HA after a BM...it was the straining...swinging on swings bothered me as well...jumping...I did not like gym class bcuz of how I felt participating....

  So my point is ur DD may have other chiari symptoms, but may not express them as she feels they r just normal the more I learned what chiari symptoms were the more I realized how many I really had.

The key is finding a true Chiari specialist...see a few Drs to get opinions, and make sure she is tested for all related chiari issues...including sleep apnea, ICP, IH, ehlers-danlos, tethered cord....

Scroll to the bottom of this screen for a link to the Health Pages for a list of the members Drs, the list is not a referral and not all drs r true specialists...but it is a starting point in ur research of Drs,

   "selma"
1679858 tn?1346768781
Just wanted to let you know that I was diagnosed at age 48.  I had it all my life and didn't know it.  I was always an athletic girl and didn't have any problems.  Even today, I have very few symptoms, a neurosurgeon said that none of my symptoms were chiari related.  My cerebellar tonsils are herniated 17mm which is considered very large, yet I do not suffer.

Of course, it is wise to have it all checked out, as Selma said, but I wanted you to know that it may be something she will be able to live with, as many people can be asymptomatic with Chiari.
Avatar universal
Thanks! After fishing for more from her, she told me she gets 3-4 headaches a week and just doesn't say anything unless it's really bad. I have the disk with the MRI pics, so am going to try to find someone to look at them ASAP. Thankfully we live in a city with a large hospital, charleston, sc and am hoping the team that spotted it will be able to connect me with someone sooner rather than later. It is the not knowing that is killing me.
Avatar universal
Like Lynn, I was also diagnosed in middle age and barely had any symptoms of any significance. I had headaches every now and then, as most people do, but mine were clearly linked to monthly hormonal cycles!!

I also played team sports throughout school and have been physically active as an adult. I was totally asymptomatic until a few years go when minor symptoms appeared that led to the discovery of both Chiari malformation and a syrinx that formed in the spinal column from the constricted CFS flow. If I had only had the Chiari and not the syrinx, I would not have needed or agreed to surgery.

If you read the research that is out there, you will see that it is estimated that many more people in the general population have a Chiari  malformation and that most will remain undiagnosed because they never develop any problems that lead to an MRI and diagnosis. That is good news for people like your daughter!  

I am a big believer in not borrowing trouble. I don't mean to stick your head in the sand, but rather to only do what is necessary to make sure there is no reason to take any action now. A Chiari  experienced NL may want to do a cervical MRI to rule out any signs of a syrinx but beyond that I suspect they will say to watch and wait and see what happens as she grows.this is assuming, as Selma pointed out, that the doctor doesn't discover other symptoms of concern that you are unaware of.

It is very possible that your daughter is just fine. Try not to worry but do make sure you find doctors who have as much experience with Chiari as possible. For what it is worth, I have a relative with Chiari who has just a few very minor symptoms and the doctor doesn't think they will ever need any intervention. It has been watch and wait for years and nothing has changed.

Good luck and please keep us informed!

Jen
Avatar universal
Signs might also surprise you. I was never able to walk or run as fast as my classmates. I always thought it was because I wasn't athletic, it ended up my knees don't have the reflex they should.
620923 tn?1452919248
COMMUNITY LEADER

  I also was not dx'd until I was 48, but it was not bcuz I did not try ....Drs just assume it is migraines and treated for that, plus chiari symptoms can and do cycle so many times we can assume we r feeling a certain way bcuz of an activity or a recent flu or cold...and we do not always report the symptoms as they appear to go away, when in fact that cycle is over.....

Not everyone is a surgical candidate as mentioned above...and it is not the size of the herniation, but if it is creating an obstruction.

   Also how it is affecting overall health is also what u have to look at.

   "selma"
992677 tn?1537672503
From an early age I'd have severe problems with Jump Rope, Swings, Merry go rounds and tetter totters.

I always felt it was normal and other kids were just weird to enjoy feeling that way. It wasn't until my symptoms went haywire at age 48 after a blow to the head that I realized those symptoms where not normal. It started as just a dizzy feeling and later in early teen years it more like I was not in my own body when doing anything like that. Even football and wrestling I was good but the slightest bump in shoulders or head and I would almost pass out. Riding bike and turn a corner too fast and I'd pass out. Too me it was all normal it never dawned on me that it wasn't normal until a couple years back when a Physians Assistant and my wife were discussing some of this stuff.

Not trying to scare you, but just saying keep your eyes open as your dear child could be self-medicating by compensating for what is not comfortable.
Hope not, I really hope the occasional headache is the only symptom that ever comes up.

CW
1925822 tn?1333709217
I agree with cw...i was symptomatic for all my life and also thought its just me that doesnt enjoy what others enjoy...everybody thaught i am athletic but as said before i could never be as good as others in sports...my twin sister was too sweet running on one spot to make me feel better...i always closed my eyes when there was soon and all the kids where asking me whats wrong with ur eyes...now i know what was wrong with me...i am sure my symptoms were triggered by a rollercoaster ride in stockholm...afterwards i was so dizzy and my neck pain started i had a symptom flare up after that...watch ur child carefully as cw said ....good luck
1679858 tn?1346768781
I also took a roller coaster ride at six flags, one of those old wooden ones... it was not exactly the ride of my life!  My brains felt as though they were being rattled right out of my head.  I used to love all these rides, but as I got older, I tended to get dizzier than before, and a roller coaster would have never given me this affect...anyway, it is possible that this roller coater brought on some symptoms that I otherwise, may have lived without.  Keeping an eye on these types of activities may help her immensly!
1719891 tn?1309294432
This is how I found out I had a Chiari.  Last year I took part in an fMRI study for a TV programme and that's when they spotted it.  There are good and bad points to coming to it like this.  I worry about it a fair bit, mainly over whether every little ache and pain is a sign that it's becoming a problem.  But on the plus side, you can make allowances for it, and make sure you look after everything and stay in good shape.  My GP is very helpful and I'm on active referal to my NS for when it does get to the point that I want or need to have the surgery.
It's a shock to find out about it this way though, so best of luck with your situation.
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