• Stuart became a registered member 2 months, 3 weeks ago

  • BethR and Profile picture of Rollercoaster845Rollercoaster845 are now friends 3 months ago

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  • BethR became a registered member 3 months ago

  • Rollercoaster845 posted an update 3 months ago

    Recent 5yr craniversary 6/7/18 MRI showed existing tumor stable.

  • Rollercoaster845 became a registered member 3 months ago

  • Linda became a registered member 3 months, 2 weeks ago

  • Bilateral Choroid Xanthogranuloma in Grandson

    Hello, I am Grandma but very involved with the now 5yr old grandsons journey. Diagnosed when he was 3,saw numerous pediatric specialists, neurosurgeon and neurologist disagreed about surgery left it to God,  one convinced the other, had surgery in April 2013 (he was 4 then), Upstate Golisano Ch…[Read more]

  • Hi everyone. My son, Jackson, had his tumor resection this past Thursday, July 19th. The doctors were amazing. The procedure took about 4 1/2 hours to complete. He spent a little over 24 hours in the pediatric ICU and then then almost 48 hours in the regular pediatric wing. We are home now and he is doing remarkably well. We are so blessed…[Read more]

  • Hi, my son, Isaac, was diagnosed with Juvenile Pilocytic Astrocytoma in January 2006 just before he turned 7 years old. His tumor was in the hypothalamus/optic chaism region. After a biopsy, he started chemo (carboplatin/vincristine). Two months later, his tumor grew over 2cm and spread throughout his brain and spine. After another biopsy to…[Read more]

  • Hi ladies. I’m glad you’re making use of this forum. My mom was all alone during my 2 operations and radiation treatment. My parents were divorced and my dad was there, but not like my mom. And he was remarried. Actually, most of my family is still on my s*#t list. So it’s really nice seeing you connect. I feel like it’s a gift for my mom. I love…[Read more]

  • My 12 year old son was diagnosed with a tumor in the anterior medial portion of his right temporal lobe at the beginning of April. We found it as a result of an MRI done after going to the doctor about odd headaches. He described the headaches as shocks of pain, though not electrical, coming in pulses sometimes with dizziness and once with funny…[Read more]

  • My son had an epidermoid tumor removed from left frontal lobe at 22 yrs old. It has caused alot of depression. He’s tried different meds but they had really bad side effects. Has anyone had any hormone testing with any help?

  • Hi, I am new to this site. Sitting here at the children’s hospital of Philadelphia where my 13 year old daughter just got admitted for headaches. She had a trigeminal schwannoma removed in 2008. She still has severe headaches that they don’t know why and can’t find a med to help!

  • Anonymous posted an update in the group Group logo of Cognitive IssuesCognitive Issues 6 years, 7 months ago

    I have been getting headaches a lot at school when I try too hard to think of things and Ive been wondering if its a bad thing like its my brain saying hey calm down! Or if its like a muscle that gets sore when its exercised but its a good thing. Before I started school my brother told me something really simple that stuck with me. He said dont…[Read more]

    • I have these headaches too. I find that I process things much slower compared to before surgery(10/11). And the struggle to find words at times most frustrating. the acceptance of the new normal is hard: headaches, seizures, mental changes.. Actually, I am still trying to find my new normal, it is an evolving thing. I still am of work, not…[Read more]

  • Anonymous posted an update in the group Group logo of Cognitive IssuesCognitive Issues 6 years, 7 months ago

    Welcome to my little group David. It’s SO nice to meet someone else who shares my annoying issues! Life can get exhausting when you feel like you are all alone. Anyway thanks for joining and have a great weekend!

    • Thanks Maria…It is very nice to meet someone else that has the same issues. I don’t personally know anyone who has had brain surgery before….so this is so new to me. I talk to a lady from the gym who had her life changed by breast cancer….she’s going through that now, so we are kinda on the same timeline.

      I’m dealing with a lot of the…[Read more]

      • I know how you feel! I just want to tell people, “This isn’t the real me! I’m better than this, I’m happier and more energetic and out going,” you know? Its hard having a handicap that no one see’s. But I guess I just have to accept this “new normal” everyone keeps talking about.

  • Anonymous posted an update in the group Group logo of Cognitive IssuesCognitive Issues 6 years, 7 months ago

    Right now I’m in a french existentialism class and I feel like I relate strongly to Jean Paul Sartre in Nausea. One of the great themes in his book is that language is a thin veneer that separates us from the real world and that when one understands this it is at the same time liberating and nauseating. With all the speech aphasia issues I have…[Read more]

  • Anonymous posted an update in the group Group logo of Cognitive IssuesCognitive Issues 6 years, 7 months ago

    Hi! I am starting this group because I would like to find others to relate to who also have cognitive issues left over from their brain tumors, medication or surgeries. I have a great deal of trouble mentally processing information. Everyone thinks I’m normal but I get nausious almost everyday and have headaches and often feel worried about saying…[Read more]

  • I am actually a grandPARENT and my grandson is older than some of these children. He was diagnosed and operated on at 19.

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