Meningioma: Anyone else? I'm frightened

I'm 54. I was experiencing numbness and tingling on the right side of my face including the right side of my tongue. E.R. thought I was having a stroke, that is how they discovered my tumor when a CT Scan was completed.

I'm 71 and had a crainiotomy for one of two meningiomas pressing on my optic nerve on August 1, 2023. (second meningioma on other side of optic nerve was treated at Mayo with proton therapy radiation treatments this past May). I was sent home two days after August '23 surgery and thought I felt great (on steroids - had no idea they make you feel good). Weeks later had tremendous headache/pain. In and out of ER to try to find out the issue. Surgeon who did crainiotomy did a flush out surgery to remove any infection which did not work. Eventually another bone specialist surgeon discovered I had infection in the bone flap from the hardware put in after the crainiotomy, along with a bone chip and other debris left from the crainiotomy. After that all was removed this past January, the horrific pain headaches went away. The surgeon who removed the items causing the pain warned me I would have headaches. I didn't for a while, but now have them intermittently, and the wound where 3 surgeries took place is now what he calls a "nuisance wound" that may not ever completely heal, and the bone flap may never heal, but we're checking it every 6 months. I'm actually doing well, considering all of this. Has not affected my health or vision in other ways. I figure I will just have to deal with headaches off and on. I'm an optimistic soul, in general, have a lot of faith, don't believe in blaming situations for what they are, so, I'm not sure my age has much to do with it. I have good genes. My parents were incredibly adaptable, overcame a great deal in their lives, lived to be 101 and 95, and taught me a lot about planning for tomorrow and living for today, and living with faith.
I think if you trust your doctors and have done research to get the best (I was told not to fly or I would have chosen a different situation, in hindsight), you should go forward with a positive mindset. The body is amazing in its ability to heal itself over time.
Each situation is different. If you're healthy, I don't think your age is a factor in your healing.

It's really stressful, especially right after being diagnosed, trying to figure out the best option that you feel comfortable with. Let us know how the second opinion goes. Glad you are taking the time and trouble to get another consult.

@kimd0529, I can understand your rollercoaster of emotion from fear to denial and back again. How did the appointment with the neurologist go? Did it help reduce the scariness of everything? What are the next steps for you?

Hello. It went ok. We are in a holding pattern for 3 mos to see if it changes and will have another round of MRIs so we shall see. Honestly, even though no risk or danger at the moment, still is scary knowing they are there.

How are you doing?

I've had an interesting outcome for myself, and my only meningioma was diagnosed at the age of 39. This occurred on 10/22/2018. I ended up having the size of my hand and it situated itself over my left eye and went up through the left side. Upon arrival to the ER I was nauseated, vomiting, incredible headache, and I no longer could remember the names of anyone, except they were "good".

I am a mom to little one's as well (6 and 12 years old). I know I couldn't respond to verbal requests or my husband, for at least 12 hours' worth of time until the medication had kicked in and started working.

I ended up having surgery on 11/9/2018. It ended with increased brain swelling, needing transfusions,
a brain defect (about a 1/4 of my skull bone was removed from the left side) and it still left behind my meningioma despite my best effort to have it removed 🙁

When I went back to the OR a few weeks later for more surgery and to have my skull bone returned, I ended up having 3 additional surgeries for an infection over the next several months! It has been complicated recovery. I was finished with radiology that finished on 6/2019.

I went back to work, and I was followed with MRI's afterwards. Then I had another regrowth after about 2 years into the process. I felt my care wasn't a priority at this time frame, my original neurosurgeon had moved, and I took time off work to find solutions for myself.

I found there was a great report with the Mayo Clinic, so I went there. I received Lutathera in 2/2022 (Peptide receptor radionuclide therapy). I was completed for care in 8/2022, with some complications along the way.

I still moved forward with the Mayo Clinic team. I had a mini stroke (TIA/without any changes to myself), and then my brain tumor regrew for a third time! I ended up with requiring Proton therapy, until 3/6/23. I prayed for everyone around me and stayed on Avastin (infusion to prevent blood clots).

It can be overwhelming with all of the changes that has brought me forward to these 6 years and almost a 1 month later. Even with all of the medications I have been on (warfarin for blood clots, dexamethasone, Avastin, Keppra, etc.)

I think it was family and prayers that had led me through this life experience so far! My hope is you are alright! May you have the best wishes to you on your pathway with a brain tumor!

cscmaryann: I has benefited from your earlier post back in August 2023, two months before my own craniotomy the following October. And what you wrote today should give all of us hope and such good advice to try and stay positive. I still have 2 more meningiomas (6 mm & 8mm) that I am currently on a watch-and-wait protocol and will always keep your forward thinking at heart rather than let their existence bog me down.

jgboyle: You have really been through it! And I can't even imagine how you made it through that ordeal with young children. I'm retired and have the luxury of just having to worry about myself. Thank you for posting. Your story is an inspiration to us all, especially me with my much lesser dire situation.

Yes I did for a year the denial was how I dealt with it.

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.