Have surgery or wait?

[Prairiehill]

I am a new member of the group who was diagnosed 4 yrs ago with a 3-cm meningioma on my left parietal lobe. Since then follow-up MRI’s have not revealed any change in size but during the last year brain reaction (edema) has increased. My primary symptom is occasional neurological deficit events whereby I experience numbness on the right side of my body. Since these occur only 5-10 times/year and last only 10 minutes I have not been too motivated to consider surgery. I have a neurosurgeon that is short on communication, doesn’t speculate, and leaves questions unanswered. Key among them are: Will brain reaction and neurological deficits continue to increase even though the size of the meningioma remains stable? Are there risks in waiting longer before having surgery? For one who has never been hospitalized brain surgery terrifies me, but I might become bolder if someone told me that had a similar size meningioma removed from their parietal lobe and emerged without permanent disabilities.

[Lytham]

Hello and welcome ! I had a 3cm meningioma removed from behind my right eye without too many side effects, has the surgeon said it would stop the adema if the meningioma was removed? X

[Prairiehill in reply to Lytham]

Thanks for the reply and good to hear that your surgery went well. No the surgeon didn't say but presumably it would in the long term.

[Lytham in reply to Prairiehill]

As far as I'm aware adema is something that needs dealing with, I think I would go for the surgery? X

[BrainBrain]

I'd be tempted to find a better NS by seeking a second opinion. The NS needs to give you straight and informative answers to your questions even if the answer to some of them is "we don't know", which it often is. Has he offered the option of surgery? Has the MDT discussed it? I sought a private second opinion because I wanted faster answers to my questions and ended up transferring to a different NHS hospital as a result. Obviously you can request an NHS second opinion too.

[BrainBrain in reply to BrainBrain]

I'm assuming you're in the UK - obviously some of my reply isn't relevant if you're not, but still, second opinion is the way to go.

[fluffyfur]

I'd get a second opinion no matter where you are. I'm in the US and am in the process of getting one from a different NS. 3 cm is large. I don't know how old you are but surgery and recovery gets far more difficult as we age. Also edema in your brain may worsen and cause further complications--this is something you need to discuss with a NS who is willing to give you a straight answer.

I am in a brain tumor group on Facebook and many there have had surgery and are doing fine.

[Gigiwith7]

I am also new to the site. I had a7.5 cm size of a baseball meningioma on the left frontal lobe removed this March. I am 66 years old. I was admitted to the hospital on Friday, given steroids to reduce swelling. The tumor in its entirety was removed Tues. morning and I was released Friday. So total of 1 week in the hospital. I took 1 additional week off of work and then back to work. I am in sales and travel but bc of Covid was able to work from home, I am now back to traveling. I would say the recovery was not as difficult as expected. Swelling around face and eyes was the worst of it. I slept with ice around face for a few weeks. I live in the US. I had 1, what they called an Aura (siezure) and was put back on Keppra for 6 months. They had weaned me off of it when I left the hospital. Right now I feel like it never happened and there is nothing I can't do. (Except drive) since they took my license. I did not have a choice (per the Neurosurgeon) it had to come out because my brain was pushed beyond the midline and the swelling was severe. I am so grateful to be alive and glad the alien is gone.

[Gigiwith7]

Hello, I am also new here. I had a 7.5 cm meningioma, (size of a baseball) removed from the left frontal lobe on March 23 this year. I am 66 years old and live in the US. I was in the hospital for 1 week and back to work in 2. I am in traveling sales. Due to covid was able to work from home for the 1st month. The only issue I have had was in May I had an (aura) very mild siezure and have been put on anti siezure meds for 6 months. This led to them taking my drivers license Lucky for me, my husband drives me to visit customers for the time being. I can apply to get it back Oct. 29th. No further issues. Swelling around the eye on the left side was the worst of recovery. I slept with ice around face and head for about 2 weeks. The swelling went down. I am fully back to life except for driving which I plan to resolve soon. I am grateful to be alive and well and so grateful to have had the tumor removed completely. Don't let the surgery terrify you, it sounds worse than it is, I don't know your age but I am not so young and came through it beautifully.

[Chrissy7 in reply to Gigiwith7]

So sorry to hear all of this but glad to hear you are doing well! I am in Canada and work with people daily in the USA… My Removal was in 2015 see my post below.The only thing I have left is sometimes under the old fashion type of fluorescent lights— like in a Walmart store for example- I will start to feel faint- just had another EEG due to this on Friday.

I am wondering what I’m feeling is an aura? I have been off all medication but having problems with AF- paroxysmal atrial fibrillation episodes since the seizures/ cardiac arrest during seizures…as explained in my profile. It’s been worse than the brain tumour honestly.

[Gigiwith7 in reply to Chrissy7]

I am not positive but I believe they call it an aura when you never lose consciousness and any symptoms from it don't last more than 24 hours. I had one sentence of slurred speech and my smile was crooked until the next morning. I hope your siezures resolve, the cardiac arrest sounds scary. My tumor looked like an alien, very odd shape.

[Chrissy7 in reply to Gigiwith7]

Thank you. Glad you are doing better too…Yes it’s kind of like electric shocks - a feeling I can’t describe …

[Chrissy7]

Hi there… I had similar sized left frontal meningioma(they called it “brightly glowing” - whatever that means…) ..,removed in Sept 2015.I had seizures then cardiac arrest during seizures.. (arrhythmia caused it EP thinks) -

My symptoms were I would lose my words a lot.. more than just once in a while. Forget my train of thought. And numbness in lower right arm/hand. And anxiety…

Mine had swelling around it so neurosurgeon [he was wonderful from south Africa and the nicest man I have ever met… I was so lucky to have him as my doctor) afterward NS told me it was made up of like a mass of grapes….

Anyway I left the next morning after the surgery and honestly didn’t feel too bad at all. I have had far worse…)worse problems with AF since …)

The strange/scary part about mine was it had grown a Dural tail (yes thru saw it in MRI)

which wrapped itself around and around the main vein in my brain that went down the middle of my head.

Two neurosurgeons tag teamed and scraped and scraped until they said all that was left was like the glue on a postage stamp.

I work from home but never had a day off work. I had some weakness and dizziness but honestly didn’t skip a beat.

Best thing I ever did and no sign of recurrence… Just a tiny bit of scar tissue remains. I have follow ups every year with MRI.

I live in Canada ..

[Piquedame927]

You need to have your surgery. But you first need to find a new neurosurgeon. With your efems issues, it is critical that you have as much of your tumor as possible. Do not be afraid of the surgery! I have had two and both were very smooth; But I think the most important thing is to find a doctor that is incredibly supportive of your situation, shares with you information whenever you need it, and explains everything really well to you. I have not had any symptoms related to my meningioma except my vision issues in my right eye, which I am literally blind in. My remaining tumor is wrapped around the carotid artery and is pressing on my optic nerve. According to my neurosurgeon, nothing more can be done for my tumor.