Proton radiation for atypical meningioma close to optic nerve

Hi @colom22 Pat, you may be interested in reading the experiences of fellow members like @rsfcowgirl @paulaakelley70 @jill333 @fiddlemama @nancye3 in these related discussions:

– Meningiomas. Gamma knife or Cyber Knife. Which is more effective? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/
- Gamma knife for meningiomas https://connect.mayoclinic.org/discussion/gamma-knife-for-meningiomas/
- Anyone had Proton Beam Therapy for Meningioma https://connect.mayoclinic.org/discussion/proton-therapy/

Have you decided on next steps?

In 2015 I had 2 meningiomas 1 was removed 1 entangled in my optic nerve and was left alone. I had 28 proton radiation treatments. I have biyearly checks on the present meningioma and it has stayed somewhat unchanged so far. I really didn't have many side effects. Dizziness if I move to fast. Some vertigo and ringing in my ears. Some of these things can be from the surgery and not the proton. I never felt ill or had any real reaction from the treatment itself.

Hi. Welcome to the forum. This is an exceptional virtual venue for anyone with medical problems.
I was diagnosed with a meningioma approx 18 months ago. Several neurosurgical opinions were in agreement with the conclusion that I did not have any surgical or radiological options. At that time, I independently researched Proton Beam therapy. It was not entertained by my Drs.
I found that Proton Beam therapy is not radiation. It's not like Cyberknife or similar. This is a different quantum particle. Instead of gamma ray in radiation surgery, this modality directs protons at high speed. Therefore, it doesn't result in the same side effects as radiation. It typically spares damage to the entry and adjacent tissue in the area of treatment. In regards to meningioma, Proton Beam therapy is not effective in shrinking or destroying meningioma tissue. It's application is for the goal of stopping tumor growth. This has to do with the composition and resistance of the meningioma tumor in contact with proton beams.
Proton beam therapy requires an extensive series of frequent treatments. This is unlike radiation beams which requires only one treatment, typically. Different tumors require different treatments, and each treatment has it's own objective.
Insurance coverage is widely available for Proton Beam therapy, tho there may be a co-pays required for each session, depending on individual insurance policies.
The numbers of machines are increasing across the US. They are used for a wide range of tumors, especially prostate tumors. This is because they are 'tissue sparing.'
I didn't proceed with this modality of treatment because the meningioma in my brain appears to have become, in essence, dormant. There are no changes. It's believed to have reached an inherent limitation of it's own. I have blood brain barrier damage and localized central edema from it, which are treated medically, as possible.
I utilize alternative and holistic treatments.
My primary struggle has been with Post COVID syndrome (PASC). I'm making progress with this under the care of a new doctor.
Wishing you well.
RanchoSanteFeCowgirl