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Meningioma: Getting ready for radiation, any tips or advice?
Brain Tumor | Last Active: Jun 2 9:23am | Replies (41)Comment receiving replies
Hi. Your story sounds similar to my husband's. His meningioma has grown back in the cavernous sinus and now has invaded the right eye orbit. He no longer has use of his right eye. The surgeons at Duke aren’t willing to do surgery in that area stating it’s too risky. He has been told in the past that they wouldn’t recommend more radiation but he is going to meet with a new radiation oncologist this week. Where exactly is your tumor located and where do you receive your care? We have received another opinion from John’s Hopkins and that surgeon recommends surgery but insurance won’t allow my husband to go there. We too are trying to trust God as we maneuver through this process but some days are definitely tougher than others. Good luck to you on your journey!
Replies to "Hi. Your story sounds similar to my husband's. His meningioma has grown back in the cavernous..."
Hello. I'm so sorry you and your husband are having this difficult time. I had a petroclival meningioma removed by surgeons at Duke a few years ago which is growing back into my cavernous sinus. I'm writing just to send good wishes to your husband and to let you know you are not alone! I'm intrigued that you found a JH surgeon willing to operate, but the Duke folks won't touch it. I know Dr. Friedman at Duke does have very good judgment. As you said, we ultimately have to trust it is in God's hands. Take care!
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Mine is in the left cavernous sinus. I am blind in my left eye since birth and worry about losing sight in my right eye. My neurosurgeon, neurologist and radiation oncologist are all located in Sioux City, Iowa. Treatment may take place in Omaha, NE, 130 miles from where we live. God's blessings on you both! He will guide you through this challenging time. Hopefully you will know what treatment could help. The waiting and not knowing is a challenge. Best wishes!