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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Chris, thank you for your reply. I’m sorry to hear of your tumor. I will be thinking of you and will always appreciate anything you can share. Tyler recently totaled his car- he shouldn’t have been driving anyway. He had a new MRI on Friday and should hear the results on Tuesday. He refuses to apply for SS Disability so I’m very concerned with how he will live when his short term expires. Maybe that will be what it takes to bring him home.
I pray for your health and happiness. Patti
I purchased Tyler CBD oil and sent it to him. He says it has not helped with pain or seizures. He is now using morphine but going off it one week each month as advised by his healthcare professional to give his body “a rest”. There must be something else we can try! I can’t bear to hear him in pain and he still refuses to see me. I have asked him for a photograph- maybe one with some of the Christmas gifts I sent- but he says no. I think his appearance must be changing and he just doesn’t want me to know.
Thank you for your concern and reply. I am sorry for your difficulties. Tyler says he has a constant headache and his seizures are multiple times each day. For pain he says that he take hydrocodone mostly. He has other pain med scrips including morphine and will use it as necessary. I spoke with him Wed. night and he states he has stopped all anti-seizure meds. He has seen a small increase in the # of seizures daily but it’s negligible compared to how he feels otherwise. He feels better overall without the anti-seizure med. We also discussed marijuana. He said he had taken a hybrid which had the THC and CBD but he didn’t like the high feeling. He said he wanted to get just the CBD oil but he has a hard time leaving his house. I found some at a local health food store and I put it in the mail to him yesterday. I’ll let you know how it works. You mention a “wide range of flowers”. What is this? Thank you for your help.
It’s been a long time since I’ve visited this site. Update: Tyler’s condition continues to deteriorate. We sent his medical records to Dr. Mitchel Berger at UCSF, Dr. Terry Burns at Mayo Clinic and both responded they thought they could get the tumor without damaging his memory. Tyler won’t accept this. Also sent his latest MRI to Dr. Marcos Marcella in Phoenix and he said he didn’t see anyway to take the tumor without also taking the hippocampus and causing much collaterial damage. It’s all so confusing with conflicting reports!
Tyler refuses to be seen by any of us. His sibilings surprised him over Memorial Day and it was a diasaster. He screamed for 5 hours. His anti-seizure medicine (aptiom) is no longer working, he lost his insurance Oct. 31 (I did purchase the Cobra plan but will be limited on how long I can afford this) and he never answers his phone or texts anymore. I know his short term CA disability will end Jan. Maybe that will force him to come home when he has no money. Last we spoke he was going to try to work for free from home for his former employer to see if he could “handle” it without seizures. He stated that if he could, he would return to work. He has refused to apply for SS disability.
Thank you for the referrals and the note.
Tyler had to stop working. He has applied for short-term disability and I hope that he is approved. Meanwhile we are supporting him as best we can. He has been seen by the top doctors at UCLA brain tumor Center and I understand that it is highly ranked among adult neurology. When we learned that it was in the hippocampus, that became a game changer. We have inquired about laser thermotherapy (LITT), they say the tumor is too large for radiation.
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.