8 YO DD Diagnosed

[momofa2j2]

My 8 yo dd is a bright, active litle girl.  She is a competing gymnast, takes dance, does cheer, plays softball, basketball and just enjoys being active.  About 8 months (or so) ago she started experiencing headaches and a burning pain between her shoulders.   Many visits to her ped, x-ray screen for scoliosis and meds did not help.  The headaches became chronic and had her in the nurses' office many times (sometimes twice  a day).  Until finally I took her to a chrioprator.  He said her C1 vertabrate was out of place and putting pressure on her brain stem, causing pinched nerves and her left leg being shorted than her right.  He did an adjustment.  He said she also has compressed cervical verte, which he adjusted too.  She was a completely different little girl...headaches gone, neck/back pain gone.  Then, she started having severe ankle pain..ped  sent her for x-rays but during the conversation and possible connection to her "rolling her ankle" to the "pinched nerves" ped ordered an MRI for brain and c-spine.  Ped ortho said stress fracture in both growth plates in rt and one in left due to overuse.  MRI scheduled for all.  DD had a marathon MRI visit (w/ contrast for brain).  MRI report on brain had one finding..."tonsillar ectopia of the cerebellar tonsils."  "...a slight herniation the cerebellar tonsils forme magnum consistent wiht tonsil ectopia."  Is this chiari?  What does this mean? No measurements given.  Nothing else noted.  Appt with NS on Monday.  Trying to get a list of questions together.  Cannot believe this is happening.  So worried.  Would appreciate any advice/input..
Thank you!    

[selmaS]

  Hi and welcome to the Chiari forum.

I wanted to add the link to our Drs list- http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

And to mention that ur DD should refrain from gymnastics and the chiropractor....both can have an adverse affect on ur DD.

We also have a list of Questions for the NS....http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

  Please keep us posted on how this next NS visit goes....

"selma"

[rod44]

Not much I can add to the feedback you got from Pam & Jenny. I hope you can get some answers for your DD soon and she can regain a good quality of life :)

Ray

[jennylynch]

I am sorry to hear that also. my daughter is experiencing many of the same symptoms as i have before and after my surgery she had her first mri andof course we are going to a speicalist for her epilepsy so he says there is not much there. so we are looking for second opinons. hang in there. my prayers are with you and your family

[pamk5]

Hello and welcome!  I am sorry that you are going thru this with your daughter.  First of all, if your daughters herniation wasnt the textbook 5mm that most consider the criteria for diagnosing cm then they would call it tonsillar ectopia.  The important thing to remember is the size of the herniation is not important.  It is whether or not there is crowding or blockage of csf fluid.  There will likely need to be more test done to check for this as well as whether there are associated conditions like syringomyelia.  

There is a list of specialist here in the forum that other members have used and liked.  Keep in mind that there is difference between a NS that occasionally sees CM and a NS that devotes his practice to it.  It is not necessarily true with this disease that the major teaching hospitals are going to be the best place to be.  There is still alot of disagreement with CM what is the correct treatment or what is the proper diagnostic criteria.  I would be prepared to get several opinions.

Hang in there!  

Pam