Watching a Meningioma Brain Tumor

Posted by robinem @robinem, Feb 8, 2018

I've just been diagnosed with a 2cm meningioma tumor on the right front of my head. I am 59 years old and the surgeon has told me I will need to "do something" with my tumor someday since I am younger. What is the benefit of waiting?

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Hello to all you wonderful people,
I am on the watch list for mengioma that is 7mm. I know nothing about these lesions and was discovered through an mri.The symptoms I have are blurry vision,fatigue, headaches,dizziness and has progressed to balance when walking. A few times this week I cannot tell where my feet and legs are. Past few months I feel as though I brefiely faint but don't. I feel like I am swaying. I have been to three mri and they don't think my symptoms are Related to the mengioma located left posterior cerebral artery and anterior to pons. In 2021 it was 5mm. It hasn't pentratraed the brain and only in mengines. Does anyone have these symptoms? Best regards,Candy

REPLY
@izzy2023

Hello to all you wonderful people,
I am on the watch list for mengioma that is 7mm. I know nothing about these lesions and was discovered through an mri.The symptoms I have are blurry vision,fatigue, headaches,dizziness and has progressed to balance when walking. A few times this week I cannot tell where my feet and legs are. Past few months I feel as though I brefiely faint but don't. I feel like I am swaying. I have been to three mri and they don't think my symptoms are Related to the mengioma located left posterior cerebral artery and anterior to pons. In 2021 it was 5mm. It hasn't pentratraed the brain and only in mengines. Does anyone have these symptoms? Best regards,Candy

Jump to this post

I've had two meningiomas, 3cm each, one removed by traditional surgery on August 1 of this year, then an emergency surgery to deal with an infection that was not within the skull. Am waiting to decide what to do and when to do it regarding the second meningioma which is on right front area above my eye, evidently near or on a vessel. Neurosurgeons evidently often recommend people with meningiomas wait to see how or if it is growing before determining surgery is needed, and what kind. I had dizziness and slight fainting spells before removal of my first meningioma which was due to the fact that the meningioma was pressing on the optic nerve and causing bleeding and pressure. I had believed I was just consuming too much coffee/caffeine! After having the stitches out this past Friday from my last emergency surgery I'm experiencing some headaches and dizziness. I will be contacting my surgeon today to see if that is because removal of stitches has caused more infection. Since meningiomas are most often benign, surgeons take a wait and see attitude, again, to see how it is acting and take MRIs every 3 months or so. Each situation is unique, so ask your dr about the symptoms you're having.

REPLY
@izzy2023

Hello to all you wonderful people,
I am on the watch list for mengioma that is 7mm. I know nothing about these lesions and was discovered through an mri.The symptoms I have are blurry vision,fatigue, headaches,dizziness and has progressed to balance when walking. A few times this week I cannot tell where my feet and legs are. Past few months I feel as though I brefiely faint but don't. I feel like I am swaying. I have been to three mri and they don't think my symptoms are Related to the mengioma located left posterior cerebral artery and anterior to pons. In 2021 it was 5mm. It hasn't pentratraed the brain and only in mengines. Does anyone have these symptoms? Best regards,Candy

Jump to this post

For the past 5 years I have seen an E.N.T. for supposed sinus issues. Slight pain if you pressed on my left eyebrow area, a zinging pain that started through my left temple and traveled to the middle of my forehead and then stopped, off and on pain on the left side of my face that I would go to the dentist and say maybe I need a root canal (never did) once in a while double vision if I was on the computer too long, but the most aggravating and more constant/consistent symptom was my left nostril burned a lot of the time. Just the left nostril and, also, if I sniffed, I could tell there was a stop point. My right nostril I could do a full sniff. I did have a CT scan 5 years ago whereby the radiologist stated I had chronic sphenoid sinusitis. My E.N.T. disagreed with the radiologist's citation. At times the aforementioned symptoms would bother me more so and I would go to various Urgent Care facilities and talk the nurse practitioner to give me an antibiotic to tamp down what I thought was a flare up of my chronic sinusitis. Fast forward to two years ago. I woke up in the middle of the night with tingling down my left arm and left leg. They did an MRI to rule out a stroke. (Side note: tingling down arm was from an impinged C-6 in my neck and leg tingling was impingement in my lumbar region) However, the radiologist cited that the CT scan showed a possible sphenoid wing meningioma (benign tumor) that should be followed up with a contrast MRI to verify. I happened to have a blood pressure appt. with my primary care doctor the next day and brought the report to him. He said, "No big deal. We find these benign meningioma's all the time in old people when we scan for strokes." So a year went by (primary care said not to worry so I didn't) and I went along with my life. But my "sinusitis" symptoms were still on-going. Finally, I put 2 and 2 together and went back to the E.N.T. for the 4th time and said, "Either I have sinus cancer or the sphenoid wing meningioma cited in CT scan to rule out a stroke is causing my symptoms." The E.N.T. referred me to a local neurologist. The neurologist found that the sphenoid meningioma actually showed up in a sinus scan that had been ordered 5 years prior but not commented on by the radiologist. He was able to measure its growth over a 5 year period and said it had grown 50%. My local neurologist also said it was deep in my sinus cavity and he didn't think any doctor would want to operate so he referred me to a radiation oncologist for radiation therapy to stop it from growing. I met with the radiation oncologist. I was shown my MRIs and told that my 3 centimeter, sphenoid wing meningioma was 1/16th of an inch from my optic nerve. The radiation oncologist was a little nervous about radiation treatment so close to my optic nerve. We decided I should get a second opinion with a neurosurgeon. I am lucky/blessed to live an hour and a half away from the Number 1, or Number 2, rated hospital for neurosurgery in the world (depending on which study you want to cite) and met with a neurosurgeon at UCSF. The neurosurgeon there said my meningioma had a 5% chance of being cancerous and given that I am a breast cancer survivor I didn't like that. He said removing meningiomas is always the first line of treatment if possible as opposed to radiation. I then said to him that 2 other neurologists had said my meningioma was in a location that most doctors would most likely not want to try and operate on. His response was, "I do one or two a week." Today, as I write this, I am two weeks post craniotomy surgery. It is a very big deal, the surgery. My care at UCSF was stellar. I put my trust in my doctor that he knew what was best for me and my trust in the excellent nursing staff at UCSF for my after care. The entire meningioma was able to be removed without damaging my optic nerve even though its location was so close to the nerve. I am having problems right now with double vision but I am told that is from the swelling of the brain surgery itself pressing on the nerve and the massive steroids I'm on will continue to reduce the swelling and hopefully my double vision will resolve soon. I have been reticent to reply to this blog because each of our situations are so specific that at times, even if categorized as "sphenoid wing meningiomas" I feel we are comparing apples and oranges. I will offer that I have a friend of a friend who had an MRI after a concussion and accidently found out he has a large sphenoid wing meningioma. But, he has NO symptoms so the doctors are comfortable with the watch and wait approach. My understanding is if you are having symptoms you need to do more homework and get a few second opinions about if you should be more proactive. In my case, while being prepared for surgery, literally 30 minutes before the anesthesiologist did her thing and put me under, my neurosurgeon's Chief Resident ( a designation I could tell he was proud of and had the right to be) visited me and said the MRI they had done less that 24 hours before showed them that they were sure they would be able to resect the entire tumor (not leaving any left over that would then need to be radiated) even though it was just 1/16 of an inch from my optic nerve. The miracle of modern medicine.

REPLY
@mkoch

For the past 5 years I have seen an E.N.T. for supposed sinus issues. Slight pain if you pressed on my left eyebrow area, a zinging pain that started through my left temple and traveled to the middle of my forehead and then stopped, off and on pain on the left side of my face that I would go to the dentist and say maybe I need a root canal (never did) once in a while double vision if I was on the computer too long, but the most aggravating and more constant/consistent symptom was my left nostril burned a lot of the time. Just the left nostril and, also, if I sniffed, I could tell there was a stop point. My right nostril I could do a full sniff. I did have a CT scan 5 years ago whereby the radiologist stated I had chronic sphenoid sinusitis. My E.N.T. disagreed with the radiologist's citation. At times the aforementioned symptoms would bother me more so and I would go to various Urgent Care facilities and talk the nurse practitioner to give me an antibiotic to tamp down what I thought was a flare up of my chronic sinusitis. Fast forward to two years ago. I woke up in the middle of the night with tingling down my left arm and left leg. They did an MRI to rule out a stroke. (Side note: tingling down arm was from an impinged C-6 in my neck and leg tingling was impingement in my lumbar region) However, the radiologist cited that the CT scan showed a possible sphenoid wing meningioma (benign tumor) that should be followed up with a contrast MRI to verify. I happened to have a blood pressure appt. with my primary care doctor the next day and brought the report to him. He said, "No big deal. We find these benign meningioma's all the time in old people when we scan for strokes." So a year went by (primary care said not to worry so I didn't) and I went along with my life. But my "sinusitis" symptoms were still on-going. Finally, I put 2 and 2 together and went back to the E.N.T. for the 4th time and said, "Either I have sinus cancer or the sphenoid wing meningioma cited in CT scan to rule out a stroke is causing my symptoms." The E.N.T. referred me to a local neurologist. The neurologist found that the sphenoid meningioma actually showed up in a sinus scan that had been ordered 5 years prior but not commented on by the radiologist. He was able to measure its growth over a 5 year period and said it had grown 50%. My local neurologist also said it was deep in my sinus cavity and he didn't think any doctor would want to operate so he referred me to a radiation oncologist for radiation therapy to stop it from growing. I met with the radiation oncologist. I was shown my MRIs and told that my 3 centimeter, sphenoid wing meningioma was 1/16th of an inch from my optic nerve. The radiation oncologist was a little nervous about radiation treatment so close to my optic nerve. We decided I should get a second opinion with a neurosurgeon. I am lucky/blessed to live an hour and a half away from the Number 1, or Number 2, rated hospital for neurosurgery in the world (depending on which study you want to cite) and met with a neurosurgeon at UCSF. The neurosurgeon there said my meningioma had a 5% chance of being cancerous and given that I am a breast cancer survivor I didn't like that. He said removing meningiomas is always the first line of treatment if possible as opposed to radiation. I then said to him that 2 other neurologists had said my meningioma was in a location that most doctors would most likely not want to try and operate on. His response was, "I do one or two a week." Today, as I write this, I am two weeks post craniotomy surgery. It is a very big deal, the surgery. My care at UCSF was stellar. I put my trust in my doctor that he knew what was best for me and my trust in the excellent nursing staff at UCSF for my after care. The entire meningioma was able to be removed without damaging my optic nerve even though its location was so close to the nerve. I am having problems right now with double vision but I am told that is from the swelling of the brain surgery itself pressing on the nerve and the massive steroids I'm on will continue to reduce the swelling and hopefully my double vision will resolve soon. I have been reticent to reply to this blog because each of our situations are so specific that at times, even if categorized as "sphenoid wing meningiomas" I feel we are comparing apples and oranges. I will offer that I have a friend of a friend who had an MRI after a concussion and accidently found out he has a large sphenoid wing meningioma. But, he has NO symptoms so the doctors are comfortable with the watch and wait approach. My understanding is if you are having symptoms you need to do more homework and get a few second opinions about if you should be more proactive. In my case, while being prepared for surgery, literally 30 minutes before the anesthesiologist did her thing and put me under, my neurosurgeon's Chief Resident ( a designation I could tell he was proud of and had the right to be) visited me and said the MRI they had done less that 24 hours before showed them that they were sure they would be able to resect the entire tumor (not leaving any left over that would then need to be radiated) even though it was just 1/16 of an inch from my optic nerve. The miracle of modern medicine.

Jump to this post

I am happy to hear you are on your road to recovery. You are very strong in ensuring you get the proper care. That is a challenge. I go and see a neurologist soon and hope they have answers. Thank you for sharing your experiences with me. I wish you the best!

REPLY
@cscmaryann

I've had two meningiomas, 3cm each, one removed by traditional surgery on August 1 of this year, then an emergency surgery to deal with an infection that was not within the skull. Am waiting to decide what to do and when to do it regarding the second meningioma which is on right front area above my eye, evidently near or on a vessel. Neurosurgeons evidently often recommend people with meningiomas wait to see how or if it is growing before determining surgery is needed, and what kind. I had dizziness and slight fainting spells before removal of my first meningioma which was due to the fact that the meningioma was pressing on the optic nerve and causing bleeding and pressure. I had believed I was just consuming too much coffee/caffeine! After having the stitches out this past Friday from my last emergency surgery I'm experiencing some headaches and dizziness. I will be contacting my surgeon today to see if that is because removal of stitches has caused more infection. Since meningiomas are most often benign, surgeons take a wait and see attitude, again, to see how it is acting and take MRIs every 3 months or so. Each situation is unique, so ask your dr about the symptoms you're having.

Jump to this post

I too thought it was coffee and tea. I tried eliminating and adding foods to my diet but found no relief. I go to a neurologist soon and hope to find a reason to my syptoms. You have been through a lot of challenges. I hope you the best. Thank you for sharing with me.

REPLY
@izzy2023

I too thought it was coffee and tea. I tried eliminating and adding foods to my diet but found no relief. I go to a neurologist soon and hope to find a reason to my syptoms. You have been through a lot of challenges. I hope you the best. Thank you for sharing with me.

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@izzy2023, have you considered getting a second opinion? Might Mayo Clinic be an option?

REPLY

My husband had a meningioma, discovered incidentally, at age 76. It was not causing symptoms, so he elected active surveillance for about a year. Because the tumor was growing very slowly but the edema surrounding it was growing rather more quickly, he elected to have surgery after a year. He was heavily influenced by the fact it was clear surgery would become necessary, and, as he aged, the surgery impacts would be greater. The surgery was done by Dr. Lanzino at Mayo Rochester. It was a great success. No side effects. Excellent recovery from surgery. He would do it the same way again.

REPLY

Hi
Glad he is doing well and wondering what size was your husband tumor?

REPLY
@ruthannray

My husband had a meningioma, discovered incidentally, at age 76. It was not causing symptoms, so he elected active surveillance for about a year. Because the tumor was growing very slowly but the edema surrounding it was growing rather more quickly, he elected to have surgery after a year. He was heavily influenced by the fact it was clear surgery would become necessary, and, as he aged, the surgery impacts would be greater. The surgery was done by Dr. Lanzino at Mayo Rochester. It was a great success. No side effects. Excellent recovery from surgery. He would do it the same way again.

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Ruthannray......Can you let is know the size of the tumor and the location.....Thank-you!

REPLY
@ruthannray

My husband had a meningioma, discovered incidentally, at age 76. It was not causing symptoms, so he elected active surveillance for about a year. Because the tumor was growing very slowly but the edema surrounding it was growing rather more quickly, he elected to have surgery after a year. He was heavily influenced by the fact it was clear surgery would become necessary, and, as he aged, the surgery impacts would be greater. The surgery was done by Dr. Lanzino at Mayo Rochester. It was a great success. No side effects. Excellent recovery from surgery. He would do it the same way again.

Jump to this post

@ruthannray, it is so helpful to hear stories like yours and your husband's. Thank you. I'm not sure if you saw @birdie1234's question about size and location of your husband's tumor, if you are comfortable sharing.

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