are these symptoms of chiari?

[boosmom95]

I am the mom of a 16yr.old girl who has been dealing with lots of the symptoms I see posted here in the forum. I have never been part of a group online like this, but am desperate to find out what is causing my daughter's problems. Just to give you a background.....In 09 She received a concussion in a soccer game after heading a ball- she did not get knocked unconcious but she staggered and was out of it....then she had 3 episodes a couple months apart ....she started shaking uncontrollably seizure like -, blacked out, and during the 3rd episode hit her head on the diningroom table and floor going down. and got another concussion.....by May '10 she could not run or do any athletic activity because of the terrible headache she got, she had a terrible reaction to bright lights, she could not go to concerts with her friends because of the strobe light activity and the loud sounds...she would get terrible headaches and start to feel bad....from sept'10 - may"11.during this past school year she has blacked out several times a month, sometimes weekly, daily and multiple times daily....she has "convulsions" with these sometimes, not every time. Her symptoms are blurred vision, ringing in her ears, feels like shes hearing underwater mostly in her right ear, terrible headaches at the back of her head and neck area, terrible neck pain, tingling in her hands and feet, the bottoms of her feet hurt alot at night, she feels nauseated after eating, she has lost alot of strength in her hands and arms, she cannot twist off a tight bottle cap, she wakes up during the night multiple times, doesn't sleep well. and is now starting to hurt in her lower back...

I am wondering if a concussion could cause a chiari malformation that maybe would have never bothered her, to become a problem ? We have been seeing a neurologist for almost 2 years now....they said it was migraines, post concussion migraines, etc...tried several meds for that and nothing helps....she has been in the hospital 2 times because of the black outs and pain....they say it is in her head basically. They tell her she is stressed, anxiety, blah blah. I have been reading on this site quite a bit and feel like she has almost every symptom of this, they did the mris and I asked them to look for chiari, and they said no she doesn't have it. do you think they could be missing something? Maybe they think it's not enough so it couldnt be that? Would love to hear from any and all about your symptoms or if these seems to match with anything you have heard of before....

[boosmom95]

Thank you - very good information to know. That is exactly what we will do.

[selmaS]

  U have to look at the success the Dr has with the patients, not what some medical board or lawyers might be saying...if u know the story of Louie Pasteur, all his colleges  challenged all of his studies and reports ......

A true chiari dr does their own research, and it is far from the thinking of the Drs that feel this is all in our heads, meaning anxiety or imagined and not the factual  malformation with symptoms that it is.

   Meet them, ask questions and go with ur gut.

  "selma"

[boosmom95]

Thank you Selma! I will check out these doctors soon. They have good reps and are not tied up in lawsuits? I really want someone who knows what he is doing!

[selmaS]

  I know just what u mean, I was sent to a shrink when I was in high school...they do not listen.....and many do not appear to care to find out what is going on if they do not know...and that is not what I understood a dr to be....*sigh*

  Many of the symptoms, I can say yes to....the blurry vision is a constant...I think more of us have it than not....

The joints hurting , yes to that too, but, I know mine is from a related condition called Ehlers-Danlos Syndrome....I also had foot pain and as a result was dx'd with tarsel tunnel, had surgery that did not help in fact I had more problems...I walked with a cane since..after I was dx'd with chiari, I was told I did not have tarsel tunel and that something was left inside my ankle causing the additional problems.....


There is a very good Dr in NC...and I would suggest u check him out- Dr Michael Rosner.....u can also look at a Dr Henderson in MD.....those r 2 that I know that r fairly close to u.


   "selma"

[boosmom95]

I agree....that is why I am frustrated. We have been at a hospital where no one is an "expert" on chiari....and they have basically told us it is in her head. She needs to see a psychiatrist/psychologist.....so ridiculous. It just makes me so mad as her mom. Because her symptoms are not fitting in a neat little box that they can check off, she is sent to psychiatry....please!

She is a happy well adjusted athletic girl with lots of friends, but due to this and all the symptoms that have come with it, she now cannot play sports as running and exertion give her horrible headaches and neck pain, cannot do theatre (due to the bright lights), cannot go to concerts with friends because of the music being so loud and strobe lights....she was in a wheelchair the last two weeks of school because of all the blackouts she's had walking from one class to the next, and I was afraid she would fall and crack her head open! Probably 30 or 40 in the last 4 months...she was lucky to have fallen on her backpack so many times and not broken a bone.

Have any of ya'll ever had the blurry vision, the hearing under water feeling, the bottom of your feet hurting, your hands/joints hurting...etc?...such strange symptoms but NONE of this started until she got the concussion 2 years ago. Then things have progressed in frequency and become more severe.

Still working on getting these MRIs up on here - will try soon. Thank you for all your input. I welcome everyone's ideas, opinions and thoughts on this.

We live in Charleston SC, and have been at MUSC....they know nothing. I'm ready to take her somewhere else...has anyone heard of Carolina Neursurgery and Spine? or Southeastern Spine? Maybe Duke? Johns Hopkins? Just wondering if there are any well known doctors down this way.....thank you.

[selmaS]

  It is not the size of the herniation that causes symptoms, but the obstruction of CSF...so a smaller herniation many times can have more symptoms than a larger one for this reason.....

Imagine the  base of the skull  a funnel...if u were to hang a piece of shoe string licorice down it and it was long, it would not impede fluid from flowing...but, put a gum drop in there upside down and it corks it up.

  The over crowding and the obstruction is far more important then the size of the herniation...in fact the width is more of an interest as a wider tonsil will obstruct more than a long thin one....plus, there r other factors that could be going on as well, such as an issue with the odontoid.....a syrinx, tethered cord, etc


It is great that u have the CD.....

   "selma"

[boosmom95]

Thank you all for your comments....I do have her MRIs on a CD....I'm not very good with the computer, not sure how to put them up on here....will try to get my daughter to help me with that....!

Looking at their comments or findings, they say everything appears normal.
But perhaps what might by small for some people might be more severe for her for some reason. Like she may only have a 1 or 2 or 3mm, but her symptoms are like someone with a 6 or 8....you know? That's what I'm wondering. Or maybe they need better pics, or someone that's better at recognizing it. I don't know. I will see if I can upload them and I would love to see what ya'll think! Thank you!

[selmaS]

  Hi...I agree with the the other 2 posters....but what u need to do is request the copies of the MRI's and  the reports...get another opinion.....As Jenshead mentioned many times things r in the reports we r never told....too many Drs feel that chiari is an incidental finding.....

It can be the result of a trauma, but it can also be congenital and just triggered by  the trauma a true chiari specialist will be able to tell u which is the case for ur DD and the best course of action.


  "selma"

[jenshead]

I agree, it COULD be CM, but it could also be a number of other things.  CM symptoms are so varied and are common to so many other diseases.  Her doctors have probably ruled out the obvious ones though.

If you can post some pictures from her MRI (did they give you it on CD?), many people here could provide opinions.  It's also important to read the MRI report yourself, I think.  Just last night I found things on my MRI reports related to CM that no one ever mentioned to me.

I do hope she has something less serious!  Good luck

[zygy2]

You are right, sounds a lot like Chiari!!!  One very good marker for Chiari that results in an MRI is if she has cough headaches.  Typically only older men experience them so if you are younger it is usually of more concern.  In my case this is how I got an MRI and how they found the Chiari. Ask her if she has back of the head sharp pains when she is straining, bending over, coughing, laughing, going to the bathroom. It is a very weird symptom so people often overlook these short lived pains but it can help you to get an MRI.  BUT... even if you get an MRI they may not tell you it said Chiari so you want copies of the MRI and report to see for yourself.  If you looks at pics on here in people's profiles you can easily learn what Chiari looks like.  It sounds like you have done lots of reading so you will know that many of us have felt we were crazy until we found the right person to listen.  My neurologist was a nightmare!  

YES YES YES.. a chiari can cause symptoms after head injury!  They say we are born with it but something triggers it or causes it to herniate further and cause problems.   I have always had headaches and lots of them but it was after a head injury that I had other issues, brown outs, dizzy, numbness, tingling, new headaches, cough headaches, ringing ears, nausea... lots of weird things!  Finally it got crazy enough to seek help and I really thought something was wrong. It was not easy to get answers and it is not fast but she should have an MRI to rule it out!  They can't tell her she doesn't have it if they have not looked at her head!  I always thought my headaches were migraines and after my decompression surgery my headaches went away, who knows if they will return in the future but it really helped!!!