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Meningioma: Anyone else? I'm frightened

Brain Tumor | Last Active: 2 days ago | Replies (261)

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@citychica

How big was your meningioma? I’m having inflammation. We don’t know if it’s being caused by meningioma. Drs have said they can’t remove all because of where it is but I still need to meet up with UCSF doctor. Did you have a craniotomy?

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Replies to "How big was your meningioma? I’m having inflammation. We don’t know if it’s being caused by..."

To begin with, in the five years I had seen the Ear-Nose-Throat doctor off and on, he always claimed I did not have sinus inflammation. When I consulted with the neurosurgeon at UCSF about the 3 centimeter meningioma that was discovered incidentally in a scan to rule out a stroke, he said, kind of as an after thought as we concluding our consultation, "And by the way, you have chronic inflammation of your sinuses." I told him I had been seeing an E.N.T. for sinus issues for 5 years and was told repeatedly I was fine. Dr. Theodosopoulos then showed me on the MRI the evidence. And as I posted before, once the meningioma came out my sinus issues resolved. I will also add that before seeing the neurosurgeon I had seen a radiation oncologist, who is also a neuro doctor. This neuro doctor told me he didn't think my sinus issues were a symptom of meningioma; he hadn't heard of that being a symptom associated with meningiomas. Well, he was incorrect. In my case, it was my main symptom. The reason I had to have the meningioma removed was because it was 1/16th of an inch from my optic nerve. The concern was it had been growing for a long time and I was losing my window of opportunity to be able to safely remove it before it wrapped around the optic nerve. I've posted this before (don't really totally understand how this forum works as far as who sees what that is posted) but you really must see Dr. Theodosopoulos at UCSF. He is the meningioma specialist there. (Other neurosurgeons at UCSF deal with malignant tumors, and yet other neurosurgeons deal with aneurysms, etc.) Two doctors I had seen before going to UCSF also told me my benign tumor (meningioma) was not in a location that could be operated on. But Dr. Theodosopoulos said he was confident it could be done. In his own words, "I do one or two a week." And the "one or two a week" was specific to my particular location. So, yes, I did have a craniotomy. And it was not the nightmare I imagined it would be. And the nursing care was exceptional. My advice to you is to consult with Dr. Theodosopoulos. You need to have any and all scans digitally sent to UCSF. Then, you can just have a video visit, which is what I did as I live 2 hours away from San Francisco. He is truly an exceptional neurosurgeon and I would accept whatever protocol he advises. Dealing with any major health issue is easier if one finds a doctor they trust to guide their decision making. Your first step is to consult with his scheduler, Tania. She will guide you through the steps that need to be taken so schedule an appointment. 415-353-2209. I wish you all the best. I know it's stressful.