precious son has chiari and syrinx... need support!

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precious son has chiari and syrinx... need support!

Postby evergreenmom » Sat Feb 18, 2012 2:42 pm

I have already posted in the pediatrics section but have noticed that it is not that active over there so I am double posting in hopes of getting more answers... please forgive me if you are reading this twice!

My nearly four year old son has chiari malformation I secondary to lambdoid synostosis. I am not new to the board but have not been very active since before now he did not have symptoms and his chiari was only 4-5 mm and considered merely to be an ectopic tonsil more than true chiari. Recently he has had a number of headaches and it was time for a new MRI anyway so...Just had one done yesterday and found that the chiari has doubled in size and there are two 4mm syrinx along his spinal cord. It was also listed on his MRI report that his anterior pituitary is at the low end of normal measuring 2mm in height. I am totally freaked out and unprepared about what all of this now means.

We are located in Seattle and have an appointment scheduled in late March with Dr Ellenbogen whom we have heard great things about. We would consider seeking a second opinion elsewhere if need be to get the best possible treatment for our precious boy. Our son was treated in Dallas,TX three years ago for his craniosynostosis by Dr Jeffrey Fearon (Cranio Facial Surgeon) and by Dr David Sacco(Neurosurgeon). Dr Sacco has shaved away a little bone at the foramen magnum in hopes of avoiding any issues with the chiari in future. We are just devastated that things are progressing now.

My son is the sweetest happiest little guy and I just want for his future to be bright! Any info and support about the condition, the treatment, what all of this means for our sons future (long term) would be most helpful. We would also appreciate surgeon recommendations. Thank you!
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Re: precious son has chiari and syrinx... need support!

Postby razzle » Sat Feb 18, 2012 5:07 pm

There is Dr Menenez top Peds NS in Iowa city, Iowa He is on the medical advisory board to asap and Dr Frim in Chicago. But You are in very good hands with Dr.E..
Another Dr Oakes in Alabama I believe ... Good luck

check here she has several children with chiari
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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