chiari type I and craniosynostosis

[shelleyz]

My 2 1/2 year old grand daughter had cranio vault reconstruction at the end of July 2011 due to craniosynostosis
(she had 3 surtures closed).  She seems to be recovering well. Along with the Craniosynostosis she also has HYPOphosphaTASIA.  Her gait is abnormal in that it is more of a waddle.  She did walk and crawl a bit late.  At 2 1/2 she is not able to run. She complains of headache, pain in legs, back and feet.  She rarely sleeps all night waking as many as 5 or more times, sometimes complaining of pain in legs, feet or back.  She also complains of the same pains during the day.  She has always been sensitive to light and it seemed like it was worse right before her cranio vault reconstruction.  She wouldn't even allow a picture (we think due to the flash).
Now she is diagnosed with Chiari Type I.  The MRI report said no Sprinx (forgive me if spelling wrong) and no post op fluid.  The nuerologist called today saying that although he hates for her to have another surgery he thinks that she may benefit from surgery.  He is referring back to Nuero Surgeon.  I believe the number they used was 8mm....
Of course her parents prefer to manage non surgically if possible.  What questions should we be asking the Nuerologist and Nuero Surgeon?  Is Chiari common for a child that had craniosynostosis and hypophosphatasia?  Is there a possibility that she will improve or worsen?  Any help and suggestions would be greatly appreciate.
Your thoughts would be appreciate.
Thank you so much.
Shelley

[selmaS]

  Hi....No worries : )

We do have a list of the members Drs, u still have to research the Drs on the list, and ask which will see pediatrics....but the list will give u a place to start.

  The list is not a referral....

  Many of us do find we have to travel to get to the right Dr....and since we r all diff  we have to all research to find the dr that is right for us.

   http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

     I do not know Drs in CA......

  Please keep us posted on ur Dr search and ur grand babies condition and progress : )

   "selma"

[shelleyz]

Selma,
Thank you for responding so quickly.  What a comfort to hear from  you and know that others have information and are willing to share.
We are in San Diego, CA
Do you know of any NS that are true chiari specialist in San Diego or So California?
Thanks so much,
Shelley

[selmaS]

  Hi and welcome to the Chiari forum.

  My goodness ur little one has a lot going on, I pray u all find answers that can help.

From what I understand craniosynostosis this is a premature closing of the skull which causes abnormal shape and growth of the skull.....

  Chiari is the malformation of the skull.....so, the 2 being linked is not far fetched...and it also seems that those with craniosynostosis may also develop ICP.

  ICP= intercranial hypertension which alone can force the cerebral tonsils down onto the brain stem...plus, u have a malformed space.....

   This is the first instance of the 2 together I have heard of...but, this is not surprising to me.

I do wonder if the child was check for sleep apnea as it is  a symptom of both conditions.

  Now, I have yet to touch on hypophosphatasia which is also a bone issue....and so involved I am not really comfortable saying too much on it.

I do not know that this is  related to chiari at all...and wish I knew more to help.

  I would suggest they check this child for tethered cord, sleep apnea, ICP, ehlers-danlos, and u mentioned no syrinx, but where did they check? Many Drs only look in the cervical spine, these can form in the thoracic and lumbar spine as well.

Last...8mm is the length of the herniation, but it is the measurement they do not give u that is more important, the width of the tonsils...u need to find out if there is over crowding and a CSF obstruction.


  Make sure ur family researches true chiari specialists that deal with pediatrics...u do not just want a NS, one that is well informed and experienced with chiari is best.

    "selma"