Hippocampus tumor

Posted by pattiboatwright @pattiboatwright, Mar 17, 2017

My 31 year old son was diagnosed Nov. ’16 with a temporal lobe tumor by MRI. Further testing shows it is also in his hippocampus. He has had neuropsych testing and WADA test at UCLA Brain Tumor Center. He has been told the location makes it too dangerous to biopsy so we don’t know if it’s benign or malignant. He suffers seizures and is taking Aptiom in an effort to control them. He also has major depression, anxiety and headaches. His team says any procedure including LITT would present more collateral damage than value to his life. Can anyone here comment? Do we need to be doing anything else? They want him to “watch and wait” and return for an MRI in June to see if it’s growing. I’m just terribly uneasy about this whole situation. Perhaps this is the best approach but I’m 3000 miles away from him and struggling with “doing nothing”. Thank you for any replies.

@chris70l

So sorry to hear the news. I hope hes alright.

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Chris, how are you doing? It's been a while since I've heard from you. My son has moved home to live with me.

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@pattiboatwright

Chris, how are you doing? It's been a while since I've heard from you. My son has moved home to live with me.

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Sorry I haven't been to this site in a while. I think it's great to be able to be with your son. Lifes been the same for me. As long as I can remember how to get dressed for work in the morning. I'm still able to drive. I Haven't had any major seizures since my dr. Uped my med by 50mg. I hope your son stays strong. He sounds like a real nice person.

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Hello, @pattiboatwright – thinking of you. How is you son doing?

@chris70l – how are you doing? Have you had any additional seizures?

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He has done better since being prescribed Lamictal ER. We are so grateful for this. He was also finally approved for disability after 3 years. It began in March and his Medicare will begin July 1. Sadly, here in AL, the only supplemental policy available to residents under the age of 65 (he's 35) is a BCBS policy that doesn't cover this med. We can file for an exception in July and pray it is approved so it's affordable.

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