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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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mono21 | @mono21 | 2 days ago
In reply to @mono21 "Hi, My name is Monique. I was hit by a drunk driver and taken to the..." + (show)
@mono21

Hi,
My name is Monique. I was hit by a drunk driver and taken to the hospital. Anyway they did a CT on my head and found out that I had Meningioma. I have the symptoms of losing eye vision and severe headaches. I’m waiting to have another CT and hopefully go back to the Mayo to get seen.
I’m scared also.
Good luck to you.

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Thank you.
Good luck to all of us. Let’s keep in touch

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mono21 | @mono21 | 2 days ago
In reply to @rwiltgen "Monique: Hang in there. I have a meningioma that was partially resected late 2020 and had..." + (show)
@rwiltgen

Monique:

Hang in there. I have a meningioma that was partially resected late 2020 and had Gamma Knife treatment in early 2021. In fall of 2021 they did corrective eye surgery. Today, My eyes are straight, my headaches are gone and I work full time and enjoying a very fulfilling life.
You are in good hands.

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Thank you so much. Even now as I write in the post my eyes are seriously bothering me. The headaches are terrible.
Thank you for listening. I appreciate it.
I’m glad your eyes are well.
Good luck.

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steveomalley | @steveomalley | 1 day ago

I have a M overlying the anterior left temporal lobe measuring 3.6x 2.7 cm. I sought a evaluation from Mayo Clinic in September 2024 and was so very impressed with the speed to seek counsel from a neurologist and neurosurgeon that were experts in their fields. There was thorough discussion and we ended with a conclusion to re-evaluate in a year with another MRI.
It took a few months to get an appointment but I went for a 2nd opinion at the surgical Neuro-Oncology-Brain and Spine Tumor Center at Northwestern Medicine yesterday. He essentially recommended the same thing and to re-do the MRI in a year to re-evaluate growth and impact ....but one of the discussion points that was a NEW POINT to me was "IF and WHEN" a surgery is needed , he would suggest looking at a trans orbital surgery which could address the Meningioma that I have in the left temporal lobe by an incision to the left of the eye instead of a full craniotomy. He indicated it is less invasive and less of an impact to the skull bone frame. I am not a doctor by any stretch to have the full information but I simply wanted to share something that may be an option. I don't know if this is new or not but the thought of it being a little less massively invasive seemed welcoming.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @cad22770 "I had one and had it removed 2 years ago. I am not going to lie..." + (show)
@cad22770

I had one and had it removed 2 years ago. I am not going to lie the recovery was a challenge at times. I would look to have it removed it is only going to continue to grow. I started getting white outs and I was in the car with my wife when I had one and she was confused because I started talking strange she thought I was speaking some foreign language.

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@cad22770, how are you doing now? What tip would you offer that helped you during recovery?

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vernepratt | @vernepratt | 1 day ago
In reply to @jasonl1012 "I’ve had a very similar experience and feelings. It was very frightening, especially when I first..." + (show)
@jasonl1012

I’ve had a very similar experience and feelings. It was very frightening, especially when I first diagnosed. The CT Reed said it could be malignant or benign. It was very scary. Two days. I finally had surgery this August. I’m almost 3 months out and doing OK. The surgeon told me I needed advert removed so I wouldn’t go blind, just make sure you get more than one opinion from neurosurgeons. I got 3. And make sure the surgeon does a lot of this type of surgery. Mine had done 250 this year of tumors in this exact spot.

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Thank you so much. I will definitely look into surgeons who are very skilled at this type of surgery. I am taking my time and not rush into surgery especially when the surgeon states the surgery will be too difficult and it's no guarantee he will be able to remove Tumor. He wants me to see the radiologist to see if they could shrink the tumor. I'll see what will come out of this.

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marcellaw | @marcellaw | 15 hours ago

Hi,
I’m 67 year old female and I’ve just been diagnosed with a mennigenoma. The doctors found it after I had an MRI for a sinus issue.
Back in the 90s, I had an episode where I ended up in emergency with severe vertigo. At the time the doctors told me it was an infection that migrated into my brain and destroyed my equilibrium and part of my hearing. I also ended up with tinnitus and had to learn how to walk again. I was left with severe pain in the right side of my head, chronic infections, ear and eye pain with blurred vision.
I’m curious if that incident was caused by the tumor, or is the tumor the symptom from all the trauma?
The neurosurgeon I visited opted for immediate surgery with no explanation why or possible alternatives. I wasn’t comfortable with this so we agreed to wait for 6 months and reevaluate at that time as the menningenoma is “small”.

I’m afraid and am having a problem dealing with all of this.

Any suggestions as to how to move forward?

To any one who has had the surgery, what were the results? Did you end up with any side effects? Were you able to resume normal activities after surgery?
Thanks

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