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Has anyone been diagnosed with Meningioma with edema
Had MRI two days ago and found 1.8 cm meningioma Met with internist today, said this is what they call a “mass affect” which is causing the brain to shift off center. If it was just a small 1.8 cm they would do a wait and see approach, but due to the swelling they will probably want to do surgery. Scheduled two appointments with neurosurgeons, one next week and week after at Cedar Sinai for two opinions. Still getting headaches. Because there are neurological symptoms my guess is they will want to do surgery. Frightening!
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Hello and welcome. It is frightening and shocking to be diagnosed with an object growing in your head. Has a steroid been prescribed for the edema? It may help with the headaches. It may be a little early in the process, but has radiation treatment been discussed as an alternative to surgery? In what part of the brain is the tumor located? If it does come to surgery, be assured that most people on this site have reported minimal pain following a craniotomy. I only took Tylenol following surgery to remove a 6.3 cm meningioma from the frontal lobe. If possible, bring someone with you when you see the neurosurgeons. They can ask more questions and take notes. Good luck and let us know how it goes.
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2 ReactionsI am replying with a seemingly same experience.
To state the obvious, you have (2) issues in play, the meningioma and the edema.
Be equally concerned about the edema. It is my understanding that steroids prescribed for the edema are only 70% effective. I would find out if the steroids will effectively treat your edema before you treat the meningioma.
Steroids show effectiveness in only few weeks of treatment, so you will know pretty quickly. GET a neurosurgeon opinion.
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1 ReactionPraying for the best outcome possible, nothing but good health and healing for you, thank goodness you found out, just in time, you have all that you need. God Bless you friend!! 🙏✝️🕊️🌍❤️
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2 Reactions@kdog1957
Interior front lobe of the brain. Just started on steroids today.. I have two appointments with neurosurgeon, one is next Wednesday and someone will be attending.
@kdog1957
Inferior left frontal lobe of the brain. The mass is partially calcified. Started steroids today. I see the first neurosurgeon Wednesday. 😔
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1 Reaction@jimw9 just starting steroids today.
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3 Reactions@jiryan
thank you. Hope you are well.
@as72 I wish you the best.
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2 Reactions@kdog1957
It is definitely frightening and shocking! I started on steroids yesterday and my headaches are gone. How long ago did you do the surgery, was it a craniotomy? I’m not sure I want radiation, I meet with first neurosurgeon Wednesday. Who decides on treatment? Do you lose your hair with radiation? Yours sounds fairly large, how long was the recovery? How are you doing now?
@as72
Hi, good to hear that the headache is gone. Hopefully you won’t have to be on steroids for too long; they can cause some issues. They made me temporarily diabetic. Strangely, I didn’t have any headaches. But the large tumor size and the edema and swelling were making me slowly go insane. My symptoms were similar to stroke or dementia. I’m lucky I didn’t have a stroke. Emergency craniotomy surgery was done a few days after the tumor was discovered. That was 10 months ago. Went home using a walker two weeks after surgery after a long period of physical and occupational therapy. I was walking unaided and biking two weeks after getting home. I had follow-up radiation treatment in the summer. For me the treatments were easy with just some minor hair loss at the temple. It’s starting to grow back 3 months after finishing treatment. I’m doing fine now, no after effects except the incision is a bit irritated. This may be lifelong as I have some surgical scars from more than 40 years ago that still get irritated. Plus I get to look forward to periodic MRI’s for the rest of my life. Huzzah! Since everyone’s case is different, I can’t predict what the neurosurgeon will recommend. Sorry for the long post. Good luck with the appointment.