Anyone have multiple meningioma brain tumors?

Hi, I am sorry to hear about your situation but don't get discouraged or terrified. I have also one M growing around my left optical nerve. The first signs were like yours, black eye and less vision in that eye. However, I had surgery in 2012 and now my vision is almost back to normal. I do not need glasses for driving only reading. By the way, nobody in my family (as far as I know) had such a brain tumor and I am otherwise a very healthy person. Again, it's difficult but please stay positive...it will help you overall and in making decision, etc. All the very best to you....

Hello @pranas

I really liked your reply to @junebug222, and especially the sentence that said,

"Again, it's difficult but please stay positive…it will help you overall and in making decision, etc."

This is so true! Remaining positive helps you to think more clearly and to make better decisions.

I am trying hard to stay positive. I leave for Phoenix Mayo Clinic this coming Weds to begin the preoperative process. My surgery is the 10th. As it draws nearer it's hard not to think about how my life will change preop and any complications I may face. However I thank God for all he has done for me during my 68 years on earth. I have been rescued many times from perilous condititions some imposed by others and some by my own self will run riot. I have a wonderful husband of almost 43 years and we raised 5 beautiful children. They have given me 10 loving grandchildren and spouses that have been gracious to me. I am so blessed. Whatever happens in surgery I trust it will be according to God's will for a reason. I just hope I can handle whatever happens with courage and a small amount of grace at least.

@rose4622 I have been thinking about you lately as I know that your upcoming surgery must be on your mind.

Your recent post states some very positive thoughts and that is great. I am looking forward to hearing from you again post-op and I hope that the symptoms you are now experiencing will be alleviated a great deal. I'm sure that you will handle it all with grace!

Thank you. I'm trying my best. It's been a few days since I first got the news so now I've had some time to digest everything. Thank you for sharing your experiences. It appears that M around the optic nerve is pretty rare?

I just found out that I have a small (1.2 cm) frontal meningioma. I had a very large one surgically removed in 2011 (it was at the base of my skull, by my spinal cord, and about the size of a golf ball) I was told at that time that I should never have to worry about getting another so I did not have any MRIs after it was removed. A month ago I was having dizziness and other issues and one of the tests my doctor did was an MRI of my brain. That is when they found this new meningioma When I met with the Neurosurgeon today he told me it is quite rare to have another occur. From reading the information on this site it seems like it is not rare?

Yes, I am. I had a large one removed from the left side of my head in 2009 and had annual MRIs done for the following five years. During one of these MRIs another one was found in the frontal lobe area on the top of my head. There are still tentacles that were left from the surgery because they could not get them. My neurosurgeon has released me but said if the latest one starts to grow it can be removed by laser. My neuropsychologist will be following me going forward. I developed mild cognitive impairment from the first meningioma which has left me without the ability to organize, follow thought processes, and loss of short and long term memory.

@jodyfreeman , I also developed a second left frontal lobe meningioma and my Neurologist didn't remark about it being unusual, just that I have another to watch on surveillance MRI's.

Hi all,

New to the forum and looking forward to having additional support system for multiple meningioma diagnosis. I'm actually 8 weeks post-op from my first craniotomy today, but am still deciding on the next course of treatment for 2 additional meningiomas they weren't able to reach this surgery (different location).

My diagnosis story is actually VERY similar to @junebug222 . I was having vision issues (vision blackout similar to when you get light-headed, loss, and peripheral vision issues) that had been going on for several months. I had mentioned it to both my primary doc and another specialist I see for another condition I have and they told me I should just get my eyes checked (I had been overdue getting my exam).

My optometrist took pictures of my optic nerve and performed a visual field test (which was found to be impaired on both side as I suspected), which found I had papilledema (inflammation of the optic nerve). She urged me to get an MRI as soon as I could.

A few days later my doc was able to order an MRI for me and that was when they found multiple meningiomas on the right cerebral hemisphere, along the cerebral falx, and right cerebellar tentorium - "at least 14" were counted. I'm 34 and otherwise healthy with no known family history of neurofibromatosis or brain tumors. The largest was in the right frontoparietal (convexity) region and about the size of a golf ball. The next largest about the size of a marble in the right cerebellar tentorium incisura.

I was referred to a neurosurgeon (Assoc. Director of Neurosurgery at Rush Medical in Chicago) within a week of diagnosis and surgery scheduled the following week to remove the largest tumor (and any other tumors nearby that could easily be removed). Recovery is going well and my first post-op appointment and MRI was last week. MRI results show the largest meningioma was resected over the right frontal, parietal and parasagittal parietal convexity - pathology came back benign (grade I). However, there are still 2 meningiomas left: one in the parasagittal right parietal convexity and the other in the right supratentorial leaflet (both about marble size).

The neurosurgeon said he could resect them, but would be a more invasive surgery since one of the tumors is bit deeper rather than superficial. He referred us to meet with a radiation oncologist who said the larger of the 2 tumors was almost too large to be eligible for radiosurgery (stereotactic TrueBeam STx), so we sort of felt the pressure to elect radiation since I wasn't too keen on the idea of going back in for more surgery having just gone through it.

However, as a 34 year old woman who doesn't yet have children but wants to in the near future, the more I read about the long term side effects of stereotactic radiosurgery, the more terrified I am about it causing radiation-induced tumors down the road and shifting pathology to Grade II or III. Radiation seems like it would delay our ability to pursue children until at least 2 more years to ensure I've fully healed from radiation treatment and then there is the risk of having to deal with radiation-induced tumors within the next 15 years.

I'm just having a hard time determining what the best course of treatment is, though my husband and I are thinking we need to at least meet with the surgeon again to discuss what exactly the implications would be to go the traditional surgery route. We didn't feel like we even discussed that option in detail at our last appointment because we go the impression he thought we would rather do radiation. Depending on what he says, we may even consider getting a 2nd opinion elsewhere.

It's all so overwhelming and confusing and obviously doesn't get any easier when you are a worry wart like me!

I have permanent vertigo since tumor excision. My tumor was in the occipital lobe. I need help coping. Any recommendations?