Cavernous sinus meningioma

@pejiota4jack - it sounds as though some good things are happening with your vision if the ground no longer appears to move when you walk. Interesting that you get a cue from your vision when you're over tired now.

Would you say that you are feeling frustrated and discouraged as your recovery is taking a different amount of time than you'd thought, or because of the new limits, or something else?

My double vision is quite a bit better. Still very "bone tired" and headaches are only better because of the gabapentin (sp?) When I've done too much the vision in my good eye lets me know I am over tired. 2 and 1/2 months after Gamma knife and still praying for healing but a little ...fustrated,,,discouraged. Trying to embrace the new limits.

I had the gamma knife procedure. It must have stopped the growth, my vision is returning to normal . At least the ground is no longer moving when I walk!! Victory!

I didn’t realize I could no longer walk toe to toe till I tried to in the Dr. office. I was shocked but the Dr report said normal for my age! I’m 56 and I guarantee I did it less then a year ago with my daughter. I am having a hard time working part time and homeschooling with this headache.

Hi @julieannarcand, you mention that you may wish to seek care at Mayo Clinic. Naturally, I support the idea of seeking a second opinion at Mayo Clinic. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

It starts with a phone call and then you can decide whether to seek the second opinion or not.

A surgeon in Denver was willing to do the surgery but my family didn’t like the odd of survival versus chances of improvement. I think it was the best choice. Reoccurrence happens with surgery too. Right now I’m cherishing the good days.

I have heard that there is a strong possibility of there returning either in the same location or a different one. My tumor didn't shrink with radiation and the next specialist said that 60% of them do not. I'm only 5 months post radiation but my eye sight has gotten worse and so have my headaches. The people I saw where I had my radiation done were all very nice but it seemed like any questions I had the answer was always " it will take 6 months to a year " for the fatigue or any other symptoms I was experiencing. So I just stopped asking

Have you had this surgery yet and if so, did it help?

I want to have my records sent to Mayo or go there. There was one suggestion from a successful surgical woman in Pennsylvania who had the same tumor in the same spot. I think you nailed it ok the head when you said that there is a huge frustration that it will only be managed and never truly taken care of. I was told that with meningiomas that they can grow back, they they can reappear or another can appear at anytime. Also that typically in our area they are very hard and dense and 60% of the tumors don't shrink. Is there anything else you were told??? I am to get am MRI every year unless my vision gets worse or my headaches worsen ( they can't possibly) or my gait is off more than I am unable to stand on my right foot and I cannot walk toe to toe. Also I have the vagal nerve reaction and if that worsens.

I live in Montana. Rochester was an 11 hour drive.