Melyssa - posted on 02/25/2009 ( 1 mom has responded )




My oldest son who is 10 was diagnosed with Chiari's malformation in april of this last year. I was told that it dosen't affect anything, so not worry about. However, he had been having some problems with his feet constantly falling asleep as well as some other symptoms. I contacted his neurologist and she said he might have a tethered cord and requested and MRI. The result weren't conclusive, so we have been continuing to monitor him and tracking his symptoms.

We also found out a year and a half ago that he has Basil -Cell Carcinoma Nevus Syndrome (BCCNS) and I recently discovered that Chiari's is one of the manifestations of BCCNS and that tethered cord goes along with Chiari's. Can anyone shed any light on this for me. BCCNS is a rare illness and my son seems to have all of the rarest manifestations of this syndrome. Our doctors are unfamiliar with it, so I am trying to gather as much info as I can to give them. None of them are familiar with the syndrome as a whole, so I am trying to find out info about each manifestion. Any info is greatly appreciated. Thanks



Jennifer - posted on 02/25/2009




Hello Melyssa I have a now eight year old diagnosed at 6 with Chiari, herniated past C-3 and at 8 with tethered cord. As I can tell you, nuerologists are kind of clueless with Chiari. You need to see a nuerosurgeon, particularly one with Chiari experience. When we got the results of Josh's MRI showing Chiari's the doctor that ordered it said she showed it to her nueroligist colleague who said that while you cane see a nueroligist, you really need to see a nuerosurgeon. We did. Feet falling asleep is a symptom as well as others that you're experiencing. Chiari's does affect things, and symptoms only worsen. We did follow with a neurologist for a bit for headaches that got so bad (Josh had an adverse and allergic reaction to Topomax) along with back of knee pain, losing feeling/numbness in legs/feet and his feet began to turn severly inward. The neurologist poo-pooed us so I brought Josh back to his neurosurgeon and we found tethered cord. He was released November 2008 and since both surgies he has been so much better. We have other unrelated issues with food allergies/esophagitis/possible celiac to deal with now, but Josh is a new kid. He was so thrilled to be able to walk around NYC in December without his legs/back/neck hurting him so bad that he couldn't walk. He also had some of his swallowing/speech issues improve somewhat after Chiari surgery. Feel free to email me: qfdmom@yahoo.com and please visit the support groups listed on our member page.



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