Craniotomy is 2/21/2025. Could use some encouraging words.

How are you doing? Please let us know🤗
Debbie in Indiana

Hi! Did the proton radiation therapy remove the tumor, shrink the tumor, or only stop the tumor from growing

It's only been since May 2024 that I completed the PRT. I've had one MRI since which has shown no change. PRT does not shrink or get rid of the meningioma. It's supposed to "stop it in its tracks" so to speak, in other words, keep it from growing by killing the cells. The meningioma remains there. Maybe, over time, it will shrink. I don't know. Will have another MRI in June for follow-up.

Ok thanks for your response! I’m being told that a craniotomy is my only option. But I really don’t want to have that surgery, and wanted to know about other options. They say I have a 1cm meningioma pressing on my left optic nerve. I’m really trying to weigh my options. Surgery doesn’t guarantee that I’ll see any better, plus it’s a very serious surgery. Whereas right now besides blurred vision I’m fully functional. This is the hardest decision I’ve ever had to make!!

Apologies for taking so long to respond! Recovery is going well. In addition to my excellent team, I credit my "basic training" approach pre-surgery: healthy diet, hydration, supplements, mental prep, family support, and exercise. I returned to work (K-8 special ed teacher) four weeks post-op. The first week back was tough, but for my mental health, I needed to go back. I'm just past six weeks post and go for my first appointment with my neurosurgeon tomorrow. Also having an MRI, which I'm a little nervous about.
Overall, my biggest issue is the constant double vision I am still experiencing. I deal with it by covering one eye, which allows me to teach. My students and I make light of it by doing a daily check-in where I uncover the eye and attempt to read for them. 😀
My neurosurgeon advises that more time is needed for healing/improvement, and I have an appointment scheduled with my team's ophthalmologist in mid-May.
My advice to someone pre-op: there will be days when you can either get sucked in to fear, self-pity and negativity or, you can use the whole experience to fuel your personal growth. Use it to encourage others, to demonstrate what strength, perseverance, and survival look like. It's a choice.

It went great! Well, as far as brain surgery goes... No thanks to a second one! 😀
Dealing with double vision now, unfortunately. I have a six week MRI and post-op with my neurosurgeon tomorrow and a May 20 appointment with the ophthalmologist. My understanding is it could be a good three months before my vision gets back to normal. I keep reminding myself that it could be worse!

Mine was located at the base of my skull. Surgery took about six hours. My surgeon was very reassuring- when I asked, he told me that the surgery was not difficult, as he has done hundreds. I hope he never retires, but also hope I never need his surgical skills again!

Doing great, just dealing with double vision. Only six weeks post-op though, so trying to be patient!

If it helps, I have zero regrets regarding my decision to have surgery. Having that thing in my head was a constant source of fear and anxiety. I felt like a ticking time bomb. For me, surgery was worth it.

I am holding you in my prayers today for a stable and clean scan. I pray the double vision resolves it's self. I'm glad you are doing well. Brain surgery is not for the weak. It is tough. The first 2 weeks after mine, felt like a hangover from hell