Meningioma: Anyone else? I'm frightened

@lisaj63: I had my craniotomy exactly 2 years ago at UCSF and just had a zoom video check up with the neurosurgeon who did the surgery last week. I can't say enough wonderful things about my experience. Dr. Theodosopoulos is the neurosurgeon you would want to see for a craniotomy and he also runs the gamma knife radiation clinic. During my initial consult 2 years ago, which was also a zoom visit, he went over the MRI I had digitally transferred from my local clinic (my meningioma was also discovered incidentally) gave me all the information I needed and said it was my choice. He recommended a craniotomy but he also runs the clinic that does the gamma ray procedure. Once again, can't say enough great things about my experience at UCSF. It's rated #2 in the country for neurosurgery.

@mkoch I’m glad you had a positive outcome and am praying that you continue to do well!🙏🏽

Thanks so much for sharing!💕

@mkoch Okay, got it! Yes I’m learning from this community that it’s all about size and placement of the tumor!

Mine is 1cm in the top RT side of my brain. I’ve had a hysterectomy so thank you for the context! I don’t see the Opthoneurologist for several weeks but will be sure to let you all know her recommendation.

In the meantime…I wait!

@dlc1953 Thank you so much! Can’t tell you how much I appreciate your prompt, thorough response!🙏🏽

My tumor is 1cm on the top, RT side so we shall see what the Opthomeurologist has to say. Fortunately, I’m surrounded by good teaching universities incl UCSF and. Stanford so will definitely tap into that resource.

I’m so glad your treatment went well and pray that everything continues to go well. Blessings to you!💕🙏🏽

@lisaj63 good morning. Gamma knife is a procedure using a one time radiation treatment. I went in around 6:30am and walked out at 3:30pm. Feeling fine. The most important thing is finding a really good surgeon at a good teaching hospital. Forget community hospitals because they are closer. Fortunately I’m an hour away from Univ. of Pa. I was given anesthesia to put a halo on my head, so when I went through the procedure my head would be perfectly still. No problem. I believe that there are 180 rays shot into one spot to target the tumor. Recovery was easy. They took the halo off after I woke up. It was easy, no pain (I’m glad that they knocked me out to put it on). Like I said I walked out feeling good. Had several checkups afterwards. Now I am on a 1 year MRI to see the progress. They told me within the first year it might be a smidgen bigger, than it starts to shrink slowly and or the Gamma Ray stops it from growing. That’s why they do it before it reaches a certain size. Again, I would think that there are other factors involved with what procedure is to be done. The size, placement etc. good luck, the worry was worse than the procedure.

@lisaj63: There are a lot of good, descriptive posts on this forum regarding gamma knife treatment from people who have had radiation to their tumor through gamma knife rather than a craniotomy. Yes, surgical removal is the first choice when dealing with a meningioma if it is causing symptoms. However, the location of this usually benign tumor or one's age or health status often cancels out the possibility of a brain surgery. I, personally, chose having the meningioma that was 1/16th of an inch from my optic nerve removed rather than have radiation. After consulting with a radiation oncologist I learned that gamma knife and/or cyber knife come with their own set of possible side effects that I didn't want to take the chance of experiencing. And my personal experience with the craniotomy was that it wasn't that bad; it was actually an easier surgery and recovery than my hysterectomy.

@janeelaine , would you share with us what you learn about the genetic profiling? I assume this doctor is looking into "gene expression profiling" for the tumor rather than into YOUR genetics. This is ongoing research several in several places and some results are just starting to come out. I would particularly like to have a couple of actual research papers to read, if the doctor can share those.

@dlc1953 Its my understanding that surgical removal is preferred but who really wants a craniotomy??? What is a Gamma Knife - I’ve never heard of that but interested in learning more.

YES! I was just dx w/ a Meningioma 2 weeks ago! Like you, I went in for something else and was told there was an “accidental” finding. I’m told it’s on the top RT side of my brain and, although not directly on a Cranial Nerve, it’s putting pressure on nerve pathways in my brain causing “mass effect” resulting in headaches and drooping of my RT eye.

I too was told it’s not malignant. It’s my understanding that they typically monitor the tumor and only recommend removing them if they’re causing issues.

YES, absolutely it’s a scary dx and I am anxious - even moreso when I read about post-surgical complications and issues! My next appt is with the Opthoneurologist.

How have I been coping? I’m religious so have therefore turned to God, family and my closest friends.

@mkoch Thank you Maryann. I will ask him directly, and, in the meantime, I will pick up my most recent imaging and seek a second opinion. I thought I noticed that the meningioma was moving down the midline.