Meningioma: Anyone else? I'm frightened
I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.
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I was diagnosed in 2005 with a menginoma tumor. My neurologist said they are almost always benign and to have a follow up mri annually. I did this for several years then got remiss and stopped going. On 2018 my family doctor wanted me to have one as a precaution. I was told it was growing and I also had a very rare non treatable, non curable amyloid angioplasty. I went to the Mayo Clinic for a second opinion. They were unable to confirm the amyloid angioplasty because the one way would be to do a brain biopsy after death. They did say my menginoma was growing and advised doing a Gamma knife on my tumor to slow or growth. Unfortunately it didn't work and the tumor continued to grow. I had 2 seizures and 2 strokes and had to have emergency surgery to remove the tumor that had appendages growing out of it. Unfortunately they were unable to remove them all. They did biopsy one that showed stage 1 cancer. I see my neurologist every 6 months with MRIs brain scans. In March of 2023 I had a stroke. The neurologist felt that it was caused by my blood thinners that I take for a mechanical heart valve . My blood gets very thick which can cause a stroke. I .would encourage you to be faithful in getting routine MRIs
because you might not know if it is growing . Prior to my seizures and strokes I had no symptoms. As a result of my seizures, strokes and surgery I have left sided balance and weakness.
i was first diagnosed with a meningioma in 2018. I am not frightened. i have very good drs and my meningioma is tiny, slow growing and am asymptomatic.
almost my entire life, ive had numerous growths on organs….only two needed to be removed and those were both on my ovaries. Wishing you the best
azbailz: I was 71 when I had a left sphenoid wing meningioma removed 9 months ago. It was 1/16th if an inch from my optic nerve. I am glad to hear you have a good surgeon. That is the key. My main reason for responding is to tell you the craniotomy was not the nightmare I had envisioned it to be. I was up and walking to and from the bathroom the day after the surgery. And post surgery, the only pain med was tylenol. Good luck.
I had it at Mayo Clinic St. Mary’s Hospital in Rochester, Mn.
Very nice people in rehab also.
Where did you have your surgery?
Rachel, I've had two meningiomas - one was pressing on optic nerve and my eye dr found the issue that was causing one severe headache after months of what I thought were "caffeine headaches." I was sent to the ER immediately for a crainiotomy. I was advised not to fly to the hospital of my choice due to "pressure" on the area of the brain. The second meningioma is abutting my optic nerve and wrapped partially around carotid artery. I researched options besides crainiotomy on my own, as I didn't want to go through another one if not necessary. I found proton therapy radiation, which is available at at least 40 centers in the US. You could research that modality. It is painless and is less than a few minutes a day over a certain period of time. Check who takes your insurance for it, if you decide to go that route. It helps to do your own research and be your own advocate, as mentioned above. May you go forward in peace.
AZ, I had a meningioma near my left optic nerve and around my carotid artery in February. The surgeon said he got it out. Things have been going well, but fatigue takes awhile to recover. Hope all goes well.
I have had a meningioma now for 6 years. Or have known about it now for that long. Unfortunately it has not begun to grow abcs I’m getting ready for a craniotomy. Mine is a left sphenoid wing meningioma. And apparently all are different. My optic nerve and carotid are very close. So I too am a little nervous.
If I don’t get the surgery there is a chance that I’ll lose my vision. There will also be some disfigurement, as that is what happens with optic nerve involvement.
So, I’m preparing. It will likely be one month from now. I’ll be out off with for a while. I do have a good surgeon. I’m 71, and I’m in pretty good shape for my age. So. I’ve got that going for me. But I’m a bit nervous. I will keep you posted. And I’ll keep you in my prayers.
aZ
Rachel. I’m sorry to hear about your problems. Just a couple of questions. Is your surgeon associated with a really good hospital? Teaching hospital? Did you get a second opinion? I think these are major questions. I had a 6mm Meningioma removed this past March, my surgeon is at University of Pa. Did the Gamma Knife on me (I believe UofP is where this procedure started). I don’t know where you live, but, I would seek out the best if you can. (Maybe you already have). You need to be your own advocate. Good luck.
I’m sorry you’re going through this. It’s awful to be told you have a brain tumor. I’m sure even worse to have all these accompanying side effects. It never hurts to get several opinions. Where do you live? Are you willing to travel?