I have a 3 year old boy who was diagnosed with an Arachnoid Cyst which was located in the Cerebellum when he was 2 1/2 years old. My son presented with global delays since he was approximately 1. The Cyst put enough pressure to shift the midline of his brain and cause mass effect on the pons and brainstem. He had craniotomy for fenestration and the surgeon, whom we are very happy with, was only able to remove less then 10%. Currently 6 months post op. my son still has a cyst approx. 4 cm and but as of our latest MRS taken a couple of months ago, the fluid is communicating and he has shown great progress in speach and motors. He still has some fine motor difficulties but nothing major. I still cannot help the constant fear of something going wrong and having to end up at Johns Hopkins again. I would really love to meet some families with children with the same type of cyst in the same location to exchange notes. I am also interested in long term stories of children who underwent fenestration of a cyst located in the cerebellum. Is there a group I can join? [email protected].
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I have a 3 year old boy who was diagnosed with an Arachnoid Cyst which was located in the Cerebellum when he was 2 1/2 years old. My son presented with global delays since he was approximately 1. The Cyst put enough pressure to shift the midline of his brain and cause mass effect on the pons and brainstem. He had craniotomy for fenestration and the surgeon, whom we are very happy with, was only able to remove less then 10%. Currently 6 months post op. my son still has a cyst approx. 4 cm and but as of our latest MRS taken a couple of months ago, the fluid is communicating and he has shown great progress in speach and motors. He still has some fine motor difficulties but nothing major. I still cannot help the constant fear of something going wrong and having to end up at Johns Hopkins again. I would really love to meet some families with children with the same type of cyst in the same location to exchange notes. I am also interested in long term stories of children who underwent fenestration of a cyst located in the cerebellum. Is there a group I can join? [email protected].
July 3, 2011 - 7:23pmThis Comment
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