Home Forums Specific Topic Forums Parents of Diagnosed Children Bilateral Choroid Xanthogranuloma in Grandson

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      Roxanne L

      Hello, I am a Grandma but very involved with the now 5yr old grandson’s journey. Diagnosed when he was 3, saw numerous pediatric specialists, neurosurgeon and neurologist disagreed about surgery left it to God, one convinced the other, had surgery in April 2013 (he was 4 then), Upstate Golisano Children’s Hospital 8-1/2 hours surgery, 2 days in the hospital only 2 small stitches as it was MRI guided steriotatic laser ablation surgery.. Tumors are shrinking as of September 2013 BUT recently having increase of symptoms a MRI scheduled in Jan 2014 with a office visit follow up (he has MRI every 3-4 months to follow progress) Looking for anyone with experience dealing with this rare tumor and rare to be symptomatic. And to let others know of other minimally invasive surgical options available. Because of the rarity of this Drs can’t tell us of how healing progression will go, we are the experts as many of you are with your own journey. I know it will be a journey, most things are in healthcare.

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