Watching a Meningioma Brain Tumor

@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.

Same boat except I'm 62. Wait and watch. Might grow. Might not. The uncertainty truly sucks.

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.

Same here. Mine is 3 cm and is calcified. Same advice from my doc: 'wait and watch, follow up MRI in 6 months'. Since I've got some other health issues going on, it hasn't been hard for me to not think too much about it. Ha...the good news and the bad news!

Hi
Glad your husband went thru the surgery so well.
Can you tell me how big was his tumor is and what symptoms he had prior to his surgery? I was told to wait a year and I am 74.

I am currently on watch wait for four meningioma that were left behind. I have had four Crainiotomy one being a cancerous tumor grade 3. They placed gamma tile in hopes of keeping the meningioma from coming back. I just had an MRI that showed minimal growth, I see my oncologist tomorrow to see what his plan is. This all started in 2015 for a large tumor that had to come out six years later I had to have another one removed i had proton radiation after each surgeries then 11 months later was my third craniotomy. I have had 1 seizure and memory loss but that could be age related. I am 71 I still have the shooting pains in my scalp occasional headaches I feel off balance. But im alive and it could have been much worse its in Gods hands and I pray they find a way for all of us to overcome this

I am surprised to hear you've had 4 craniotomies. I didn't know that was an option. I had a craniotomy 6 months ago for a meningioma that was almost 3 cm. and close to my optic nerve. I also have 2 other meningiomas that I need to deal with (now that I'm 6 months post surgery I'm mentally up to dealing with the other two) and I thought my only option was radiation, which scares me more than another craniotomy. Good wishes for you as you continue to navigate your health issues.

A brief update......I just had an MRI and once again, no change in my 2 Meningioma's.......Now 17 years of Watch and Wait with NO needed surgery!!!!! Just wanted to share so others are not so afraid if they are on a watch and wait for years 🙂