chiari 1

[crystalscruggs]

my 9yr old son got diagnosis with chiari 1 .on 3/29/11 and had sugery on 4/29/11                                                  the mri scan shows approximately 2.7cm .after sugery his eyes hurt all the time the ns said he dont no why. i think it has something to do with the chiari can anyone help me understand this condition better.
If anyone could me it would greatly appreciated.

[Armywife7901]

Check out Emery hospital in atlanta. My family is from Georgia and Emery is WONDERFUL!! I would shocked if they do not have a chiari specialist.

[selmaS]

  A true chiari specialist will still see him even tho he has already had surgery, just a NS that does the surgery most likely will not.

    "selma"

[crystalscruggs]

yes i can travel. and i called a specialist they told me it would be hard to get in because he already had surger.

[selmaS]

  Can u travel to a specialist with ur  insurance?.....Can u select the NS u go to see?

  I had to go out of state to find a dr that really knows and is experienced in chiari...it makes a huge difference.If u have copies of his MRI's u can send them to some of the NS's as many will give u an opinion from them....some may charge a nominal fee, while others do this for free in hopes u will bcome a patient.

  "selma"

[crystalscruggs]

no he a dr at scottish rite hospital in atl ga there is no specialist here. but my son is hurting with his eyes every day and no one can tell my why i need help with this and dont no what to do.

[selmaS]

  Ok, so he was dx with a learning disability, he is just having cognitive issues, which is very common with chiari.

Did he have a MRI of the cervical spine,, thoracic and lumbar?....I am assuming since they said no evidence of a syrinx they did a MRI of the cervical spine, but not the rest of the spine.......

  Is the NS u see a Chiari specialist?

[crystalscruggs]

no and his learning disbility is he has a hard time in school reading and math. he said there seems to be some fluid flowing anteriorly at the foramen magnum.there is no evidence of syrinx. however the mri only goes to a c5 on sagittal imaging

[selmaS]

  So, does that mean he did have a CINE MRI/ a flow study?....u mentioned there was some flow anteriorly, what about posteriorly?

What type of learning disability does he have?

   "selma"

[crystalscruggs]

At frist he was diagnosed with migraine headaches.they was not improved with meds.when the mri was done they told me he had chiari 1 and some fluids was flowing throw the anteriorly at the foramen magnum.He had significant headaches.the headaches was worse with activity his arm and legs had some numbness.he also has a learning disability and memory loss.

[selmaS]

   Hi and welcome to the Chiari forum.

We r not Drs here, and I am very surprised by how fast ur son was Dx and had surgery....may I ask what symptoms he presented and what issues the Drs said required surgery?

  What MRI's were done pre op?

We may not be Drs, but with a bit more info we may be able to direct u to some ideas that may help.

   "selma"