Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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mkoch | @mkoch | Aug 26 11:51am

In reply to @citychica "Yes. I’d love the his number. I definitely also like the idea of a video visit." + (show)

415-353-2209 (You should be speaking with Tania) Did you ever hear back from Jason?

citychica | @citychica | Aug 26 10:24pm

In reply to @mkoch "415-353-2209 (You should be speaking with Tania) Did you ever hear back from Jason?" + (show)

Thank you. No word yet.

citychica | @citychica | Sep 1 11:51pm

In reply to @citychica "How did it go?" + (show)

How was the surgery?

jasonl1012 | @jasonl1012 | Sep 2 6:38pm

It was difficult. I had to stay over four nights. But doable. Make sure you have someone that only does school-based tumors. Someone that has a lot of experience in the endonasal technique. My surgeons team has done over 4500 of them definitely not something you want a surgeon that does spine, other brain tumors, general neurosurgery, etc. I have my first follow up tomorrow. So far I have double vision off and on, blurred vision, headaches, and some definite pain at the tail bone(whatever that’s from). They took a graft from my left IT Band(outer thigh) for nasoseptal reconstruction. It’s barely sore. Also of note, they will bolt you into a halo so you’ll have 4 sore spots with scabs, just so it’s not a surprise.
Keep on on thriving!

mkoch | @mkoch | Sep 3 9:51am

In reply to @jasonl1012 "It was difficult. I had to stay over four nights. But doable. Make sure you have..." + (show)

Jason, I'm glad to hear the endonasal procedure is behind you and you are definitely doing well enough to write an update. My double vision (after a craniotomy for a skull based tumor)
was not off and on, (as you are experiencing) but constant. It did resolve in about 3 months. I wish you continued progress and for you to be feeling your old self soon.

elisabeth007 | @elisabeth007 | Sep 3 7:04pm

i was diagnosed with a meningioma in 2018. I have follow up MRI’s but no symptoms. Staying on watch and wait

Colleen Young, Connect Director | @colleenyoung | Sep 16 8:48pm

In reply to @jasonl1012 "It was difficult. I had to stay over four nights. But doable. Make sure you have..." + (show)

@jasonl1012, just checking in. How is recovery going? Have some of the vision issues gotten better over the past couple of weeks?

@citychica, how are you doing? Did you and the team at Mayo decide on next steps?

jasonl1012 | @jasonl1012 | Sep 17 8:36am

In reply to @colleenyoung "@jasonl1012, just checking in. How is recovery going? Have some of the vision issues gotten better..." + (show)

I am healing slower than I would like to be. Although I’m continually told I’m an overachiever. I need to learn how to relax and let my body heal. My double vision is improving. I can’t wait until next week when they will clean out my sinuses. At this time, I will also be able to start doing more activities. I just need to remind myself slow and easy does it

steveomalley | @steveomalley | Sep 17 9:49am

In reply to @elisabeth007 "i was diagnosed with a meningioma in 2018. I have follow up MRI’s but no symptoms...." + (show)

I am in the same situation. My wife and I were at Mayo Clinic, MN last week to review a recent MRI showing my meningioma tumor measuring 3.6 x 2.7cm . It was first discovered by accident in 2017 and measured 2.5 x 2.5 cm. Since we don't know the growth pattern and I am also not showing any symptoms, we are going to wait until next year to re-do a MRI and see what additional information surfaces. Good luck to you.

Colleen Young, Connect Director | @colleenyoung | Sep 26 10:44am

In reply to @steveomalley "I am in the same situation. My wife and I were at Mayo Clinic, MN last..." + (show)

@steveomalley, so great that the meningioma is not causing any symptoms. You mentioned that you don't know the growth pattern. Was the growth recent and sudden? How are you feeling?