I need help regarding my niece who is an adult (29) with Noonan Syndrome. She has had problems with sponaneous episodes of vomiting for about a year. We took her to the Dr. again recently and she felt a suspicious area on her left side. The CAT scan revealed a mass near or on her spleen. In the literature I have searched on the websites, I noticed a reference to lymphedema and a condition called, Intestinal lymphangiectasia. Could anyone tell me if they know anything about this condition or have had any experience with it or any other problem with the lymph system. She visits the surgeon tomorrow and I also need to know more about malignant hyperthermia post-op. I noticed there may be some disagreement about this now. Of course, we are frightened. She is mildly mentally retarded also. Thanks for any help.
My son had a mass in his lymphatic system - a Cystic Hygroma - not exactly
the same but if I can be of any help please email me
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Today the surgeon said that Amanda has what appears to be an enlarged spleen. But he won’t know exactly what it is until he opens her up. I can’t deny I am afraid of the anesthtesia for a major surgery. He said whatever is there is pressing on her stomach and making her vomit at times. Where was your son’s tumor? I have read everything I can and all I see is what can be described as a very sluggish lymphatic system. So sluggish it can accumulate places. Thanks for the reply.
I hope all works out
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stay in shape.