Hi! My husbands brain tumor diagnosis was in December 2018 and his first surgery to remove stage 2 Oligodendrogliomas was February of 2019 followed up by 6 weeks of radiation and then 6 months of oral chemo.
Fast forward to December of 2022 diagnosed again with a brain tumor surgery in February of 2023 to remove stage 3 Oligodendrogliomas followed by a week of cyber knife radiation.
Fast forward to December of 2023 unsure if it was another tumor or necrosis caused by the cyber knife radiation. The months between January and May were absolutely hell due to miscommunication my husband was on a steroid for way to long trying to get the headaches to subside. His legs stopped working properly and he was not able to walk very well. He was finally scheduled for surgery in May and confirmed the diagnosis of necrosis. However due to the medical system he was in having a cyber attack just days after surgery we were unable to get the confirmation of diagnosis for close to a month. He was following up with MRIs every three months.
Once again in December he was diagnosed with what they assume is either necrosis or a tumor based off our past experiences I'm inclined to believe tumor. They gave him medicine for the headaches this time that was not a steroid and it was working great but in the last couple of weeks the headaches are back regardless of medication and he has always had issues with being very tired and very short tempered when he has a new tumor.
My husband is a very strong minded person and frankly one hell of a fighter I just concerned how many more surgeries can he have and not consider giving up.
We were told up front that his type of tumor "Oligodendrogliomas" often comes back. Has anyone here had this type of tumor and if so how many resections have you had.
My apologies for the long post but as you can see we have had a long tumor journey.
