Amit
Junior Poster
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Posts: 50
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Hi Ravi, First off, Stay strong.. Secondly, good luck with everything for your son.. Our son suffered a massive stroke at 6 months of age. I am not aware of your son's background, tumors and other details you have mentioned, but there is a very very high possibilty that you son was mis diagnosed.. We had a very bad experience when we were in india(doctors telling us to loose hope, to remove his brain, to sympathy..) Some said, just pray to GOD. Yes, we did and our prayers were answered.. We met Dr. Lingappa from Hyd, India and he had returned from forign lands and had seen moya moya before and he diagonsed it correctly as moyamoya.. the best of the best we had seen (neurosurgeons/ neurologists etc) were not able to diagnose the disease correctly.. If possible, send your MRI scan reports (the images that you get in a CD) to Boston Childrens Hosptial, Dr. Ed Smith, Dr. Scott. They have a weekly meeting I think it is on Wednesday, where they discuss such cases.. If not possible, send the MRI images/ CD's to Dr. Lokesh Lingappa in Rainbow Children's Hospital, Hyderbad. you can also send them to CMC vellore (really good doct) , also to AMIIS (you need to have a contact there) for 2-3 opinions.. We were also asked by our neurosurgeon to wait.. The reason is the surgeons are not that confident of surgery in such young patients, (our baby was just 6 months old, and we were asked to wait for a 1 year..) Boston childrens responds quickly (within a week). You can also send to Standford, Dr. Steingberg and get another opinion.. to confirm if it is moya moya or not.. my suspision is that your son has been misdiagnosed earlier and all these symtons are due to moya moya.. Did you son receive any tramic head injury or something? Feel free to reach out to me. I will try and call you at the number you have listed..
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