Post by pinkdutchtulips on Nov 12, 2020 14:11:48 GMT -5
Hugs to you ... this has to stressful
My bf had a seizure at work 4 1/2 years ago. Scans showed a tumor and they were able to remove 95% it (they couldn’t remove what crossed the midline). From what I’ve been told, they have no idea how long the tumor had been there before the seizure.
We’ve been together 3 years at this point ... I missed the treatment part but I’ve been there for all of the follow up. Feel free to PM me.
My bf had a seizure at work 4 1/2 years ago. Scans showed a tumor and they were able to remove 95% it (they couldn’t remove what crossed the midline). From what I’ve been told, they have no idea how long the tumor had been there before the seizure.
We’ve been together 3 years at this point ... I missed the treatment part but I’ve been there for all of the follow up. Feel free to PM me.
Thank you for sharing! I hope he’s doing well now.
I am sending you and your family internet-stranger love! Many wishes for peace and strength being floated your way. You've got this. Maybe not today, but you will.
My bf had a seizure at work 4 1/2 years ago. Scans showed a tumor and they were able to remove 95% it (they couldn’t remove what crossed the midline). From what I’ve been told, they have no idea how long the tumor had been there before the seizure.
We’ve been together 3 years at this point ... I missed the treatment part but I’ve been there for all of the follow up. Feel free to PM me.
Thank you for sharing! I hope he’s doing well now.
he’s doing well now. he goes in for scans every 3 months to make sure the nugget that’s left doesn’t change. He’s on anti-seizure meds for the rest of his life because of it.
Post by Monica Geller on Nov 12, 2020 18:53:15 GMT -5
Thank you everyone! I’m so glad to have this place. I’m sorry for those of you who have experienced similar but I appreciate you sharing with me.
We have an appointment at Ohio State with a highly recommended doctor. I’m praying he’s “the one.” I have several other names too. People have been generous with sharing what and who they know.
I also reached out to my therapist and she’s trying to find a time in her schedule to fit me in.
My cousin and my MIL have both had surgery on small brain tumors. My MIL had it near her pituitary gland, so they couldn’t get it all. She had radiation and it hasn’t grown. My cousin’s was benign but kept growing. She had some side effects probably related to location, but is otherwise doing great.
Possible TW... Monday night around 11pm my husband suffered a major seizure. I had to call the squad. He came around and they took him to the hospital. They obviously ran a lot of tests and scans. Yesterday they told us he has a brain tumor. 😭
The neurologist and neurosurgeon are optimistic that it can be removed. It’s a slow growing one that has probably been there for years, until Monday when it triggered a seizure. He’s been released home and is on anti-seizure meds.
We’re getting a second opinion. Hopefully at Ohio State or Riverside. But I’m open to all possibilities.
How do I do this?! I’m so scared. How do we do this?
I’m open to any advice anyone has who’s been through something like this.
I’m so so scared.
I found my brother with a brain tumor in April. Like your husband, slow growing-none of us had any idea. He was about an hour from dying according to his neurosurgeon-he went to first hospital where they found it and then transferred him to trauma hospital for emergency surgery Bc his Brain was so full of CSF. This was a Sunday. He was completely nonresponsive Sunday night but then started to respond early Monday. On Tuesday they did the MRI and on Wednesday determined it was benign but huge and in a bad area. They took about 75% out the following day. He walked out of the hospital a week later. His short term memory was pretty bad for a few months but conflictive therapy really helped. He’s about 1.5 years out and you can’t tell anything happened. He will continue having MRIs for life to monitor the growth since the part that is left cannot be removed bc of the location.
It was a horrific experience. But there is hope. Please reach out to me if needed. I am happy to answer any questions. I’ll be thinking of you.
Oh and abta can get you and h a mentor for his specific type of tumor if you’re into that. I’ve had mentors and mentored others, it was nice to just talk with someone who knew MY tumor, since they’re all so different. Understood when I was angry, but grateful, and talked to me like a human. It’s hard to explain.
They’re a great resource, for mentoring and general info. I had an ependymoma, so I also loved CERN since that tumor in the brain is fairly uncommon in adults.
Thank you for this! I’m so sorry you went through this but I appreciate you sharing. We’re both going to need to talk to people I think.