Mayo Clinic Connect
Is anyone here dealing with multiple meningioma brain tumors?
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?
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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.
Liked by Colleen Young, Connect Director
@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.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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!
Liked by Colleen Young, Connect Director, mrector
I have permanent vertigo since tumor excision. My tumor was in the occipital lobe. I need help coping. Any recommendations?
Liked by Kanaaz Pereira, Connect Moderator, mrector
Welcome to Connect @dfeins,
I’d like to introduce you to @pharmamom @kweber @rose4622 @hopeful33250 @rachelanne, who’ve written about vertigo in these discussions:
– Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/
– Cerebellar Stroke – experience/treatment/recovery https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/
Here’s a conversation, specifically about vertigo that might also interest you:
@dfeins, when did you have the tumor excision? May I ask what treatments you’ve tried to control the vertigo?
I have a benign meningioma pushing on my spinal cord that I have to have surgery on. Anyone have this surgery?
I have a tumor pushing up against my brain stem, not sure if that is the same thing, but my doctor felt surgery would be too dangerous so I had Cyberknife Radiation. Could that be an option for you? Sending strength and a huge Montana hug. love,peg
Liked by Colleen Young, Connect Director, KarenBB
Hello lovely Ladies,I feel like an investigative reporter. Thank god for Mayo Clinic having I can this wonderful connection where people can discuss this frustrating tumor and the many investigative methods we have all gone through. My name is Ellen and I can assure you that I am writing a book to help other patients deal with this tumor type such as we have!!! I have had two brain surgeries, have used the number one brain surgeons in Los Angeles and both times my so called meningioma was called, benign. Each time it has come back from two to five tumors; from grade1 to grade2. I have had radiation therapy (6wks) and told that I had an 85% chance that the tumor would shrink and would not come back. I am waiting for my results at the end of June. I am told the only way to save myself is with surgery. The last surgery I had affected my left side(hand) no feeling. This was from a stroke I had during surgery.I am lucky that this was the only effect from a a-typical benign meningioma having gone from grade 1 to 2. I have read every doctor study, called all universities, seen many neurologists and honestly getting contradictions which I am not at liberty to discuss. The only true facts I have discovered: This is based on a woman’s hormones and apparently we are ingesting more hormones from our food. Also that woman who have had t hyroid cancer and used the incorrect radiation treatment following their cancer have our tumors. I am still investigating the source of these tumors. Please stay strong ladies, this disease is not for the weak. A big thank you to Mayo Clinic whom I will be having a consultation with soon. I have been searching for a site that brings meningioma patients together because we definitely have to fnd a way to get rid of this tumor, and believe me yearly brain surgery is not the answer to a quality life.
I have had radiation as a child when they didn't know how dangerous it was. I have had surgery for a golf ball size meningioma. They couldn't remove all of it because it was in a dangerous spot. Don't know when I developed another small one. Even tho I had a MRI every year no one ever mentioned another one. It is starting to grow and they recommended the Gamma Knife. I am going to see what Mayo in Rochester has to say. I would like them to do the procedure.I also had thyroid cancer 20 years ago. Worked in a hotel and had a group of researcher from all over the world who were studying meningioma and the connection of thyroid cancer and the tumors. I joined their study group and gave my DNA.
Hi @nancirae, Did you get a second opinion from Mayo Clinic? Do you plan to get gamma knife treatment?
I went to Mayo and had a wonderful Dr Ruff . He told me that I didn't need the Gamma knife.He felt that it was not aggresive like they told me here. He explained this tumor was slow growing. I will have a MRI every year to watch it. Complete opposite from what they told me. Go to Mayo and get a second opinion.
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