Meningioma: Anyone else? I'm frightened

@poofy ,No, they say the hearing loss is from a virus. I woke up deaf on the Lt side. It's called Sudden hearing loss. They don't know anything about it. They tried steroids by mouth then injected into the ear drum. It did nothing.

@dollyjaneprenzel , I'm doing fine so far. Just tired after radiation. Trying to back off being hard on myself for not doing more at home and in the yard.

@crowley53 oh my gosh, I'm so sorry that happened to you. I have never heard of sudden hearng loss. I bet it feels weird. I just had my hearing checked and both ears are below the normal hearing range. My doctor wants me to get hearing aids. But my insurance won't cover them. he said try them for 30 days and if I don't like them take them back. That seems weird to me if I need them why would he say that? I asked if if the loss was from the tumor and he sad "oh you have a tumor" its written all over the papers I feeled out. Righ there I lost my confidence in him. I gave him my mri cd and I don't think he could find the tumor. The way he was looking at it as to fast and jumping back and forth between images. Then he got up and said the tumor is not causing the hearing loss and walked away. Appontment over . So I'm not confident with him. He looked and acted like he was ninety. Kinda bent over and shuffeling his feet. So now I have to get another oppinion.

@poofy, Find another Doctor! Your Dr. should help with an appeal to the insurance company. You have to fight for yourself. Be strong and fight for what you deserve. It's ok to cry but come back stronger.

@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.

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.

@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.

@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.

@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.

@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.