Meningioma: Anyone else? I'm frightened

I'm still in holding pattern. I am trying to get an opinion from Mayo neurosurgeon(s), but not sure they are willing to get involved, as one has advised me to stick with my local surgeons (who seem to differ in opinions), since they know my case better. (one did the crainiotomy, the other removed the infected hardware from the crainiotomy). I'm sure all are trying to do their best, I'm just wanting to know the best avenue to take.

I have a falx meningioma brain tumor, I was diagnosed last year. I was hoping that by the time I went for another MRI it would be gone.I guess I was hoping for a miracle. It's still there so that's what my MRI showed, so I see a neurosurgeon Thursday to find out what I need to know about having this.I have had a lot of issues since the discovery of it ,I have not had a seizures yet,that scares me, I take it day by day some days very few symptoms and other days to many,I believe my worse problem is forgetting simple things I can see it and but I just can't get the words out. I will say a prayer for you, If you just want to talk just reach out .

My main symptom was chronic sinusitis and my left nostril always burned. I had not had any brain imaging but kept going to the E.N.T. off and on for 5 years complaining of sinus issues. Finally, I had a brain scan for a different reason, (to rule out a stroke because of tingling down my left arm) and the 3 centimeter meningioma was discovered. I took my report to the E.N.T. and he said the meningioma was not causing my sinus issues. Well, he was wrong, because all those symptoms disappeared after the meningioma was removed. My neurosurgeon said I had chronic inflammation due to the meningioma. But, to answer the most important question, the neurosurgeon wanted to remove the meningioma because it was 1/16th of an inch from my optic nerve. He was fairly certain he could remove all of it without damaging the optic nerve but that window of opportunity was limited because, even though slow growing, 1/16th of an inch was already right at the limit of being able to resect it without damaging my optic nerve. And, I will add, given that 2 other neuro doctors said no neurosurgeon would be willing to attempt to remove the meningioma given its location, I think the successful removal of mine rested in the hands of a very skilled doctor. Location is everything and yours may not be in such a tricky location to deal with.

I had one and had it removed 2 years ago. I am not going to lie the recovery was a challenge at times. I would look to have it removed it is only going to continue to grow. I started getting white outs and I was in the car with my wife when I had one and she was confused because I started talking strange she thought I was speaking some foreign language.

I just found out I have Meningioma a couple weeks ago; I am terrified as well. I met with the Neurosurgeon who suggested that if I was that terrified to speak with Oncologist about radiation to see if they are able to shrink the tumor. Given the location of the Meningioma, it was not guaranteed for a total removal only enough to relieve pressure from the nerves. I started experiencing pressure, tingly in my face and stuffiness in my right nostril is the reason for the CT Scan. The thought of being in surgery for 8 hours to remove parts of a tumor is frightening for me.

I lot of you who have gone through this experience has given me hope.

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?

I’m 42 years old. I’m interested in knowing everyone’s age and how their recovery was. I have young children (5,7,9) so I get especially nervous with the risks involved in surgery.

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.

Have you thought of getting a second opinion? Did the doctor specifically say the surgery would be 8 hours? I was told by 3 doctors that my meningioma was in a tricky location, difficult to access, (and that is why 2 of those 3 doctors said surgery was not an option) but the 3rd doctor I consulted at UCSF , who did the surgery, did it in less than 4 hours. And my meningioma was totally resected, although the other two aforementined doctors who did not do the surgery also questioned if that were possible, that being the total removal of it. I've stated this before, I have had 2 mastectomies 18 years apart and the craniotomy was no worse.

Yes, the Dr told me it would take 8 hours because of the location of the Tumor with no guarantee he will be able to get all of the tumor. I'm going for a second opinion this week. Hopefully I get better answers than being in surgery for 8 hours. I wanted to go to Houston Methodist to consult with Dr.s there if I don't get the answers I'm looking for this week.