Nobody knows anything about meningiomas. I didn’t.
After I found out about mine, I went searching for info and found a host of resources. I stumbled across a Facebook group for folks like me with these freeloaders living in our heads, along with those who are in recovery after surgery. A new world opened!
Y’all, how can we not know about this? How are there well over 8,000 members of this group, yet “meningioma” is not a word familiar to most of us?
Well, it’s about to be. Let’s create some awareness…
What is a meningioma?
● Meningiomas are the most common form of tumor in the confines of the skull and down the spinal cord.
● The meninges is the membrane that covers the brain and spinal cord. You know the word “meningitis” which is an inflammation of that membrane typically due to an infection.
● Meningiomas are tumors that grow from that membrane. They will either crowd out the brain (they can get as big as oranges!), or they grow around critical brain structures (like the ocular nerve, for example), and in either event, they can really cause trouble.
● Meningiomas are mostly benign. A small percentage turn out to be cancerous, but they can. Nonetheless, the seriousness of meningiomas should never be downplayed given the havoc they can wreak in one’s brain.
● It is really unclear why or how they “happen” in the brain. Many people walk around with them on the regular but don’t know it until the tumors get big enough to affect the brain and cause trouble.
What’s up with mine?
● I have two. One, I understand, is on the parietal lobe (on top on my head, then back just a bit). It’s about 2/3 of an inch big, and from initial scans, is just sitting there quietly.
● The other one is located right where the frontal and parietal lobes meet (on top of my head just left of center). I understand it has grown down into the falx (the folds the divide the brain down the middle into two hemispheres).
● The second one is causing my trouble – seizures, weakness, loss of coordination and balance, and motor control problems, all on my right side. It’s the one getting evicted on the 28th.
How do they do it?
● The neurosurgeon uses a specialized CT and MRI (which I will get soon) to help him pinpoint exactly where to go. He will open up the skull and cut out a section of the meninges to get to the brain.
● He told me he’ll have to move the brain back a bit and figure out how to free the tumor from the falx. It may require that some of the falx be removed, or he’ll just cauterize it.
● It is likely, I understand, that I will experience “SMA Syndrome” after surgery, a phenomenon that occurs after there is trauma (surgery) to this part of the brain whereby I may lose my right side and/or speech temporarily.
● “SMA Syndrome” could require my move from the hospital to a rehab facility to learn to make those critical mind-body connections again. He said that I, for example, could not reach out and take a ball from him, but if he threw it at me, my reflexes would still swat it away. I would need to coax that ability back, and it could be achieved in a matter of weeks.
● I understand that hospital stays aren’t all that long. Some people head home in a few days, some take a little longer. People make quick recoveries, though, and end up as right as rain. Miraculous, right?
How do we feel about it?
People ask me this often. Of course, I’m scared. I’m scared to death actually, but here we are. I have nothing to do but face it, hold on tight, and fight through. That’s the plan. Nothing about brain surgery sounds savory. Keith and my kids are afraid, too.
After Keith’s bout with cancer and a botched surgery in 2015, we no longer enjoy the “ignorance is bliss” privilege. Stuff can go wrong. We’ve all seen it. We all know the horror of it. We’ve all been emotionally crushed again and again. We are wary, at best.
Everybody in this house is pretty chill right now, though, going about their business and riding this wave. I often preach that we should never worry until it’s time, and I’m hoping that’s how everyone is living. (We will all probably either need serious therapy or become eerily funny after all this.)
What’s cool about this?
● Not much is cool about this, actually, I’ll be honest. But the color for Meningioma Awareness is purple. PURPLE, Y’all!
● I bought some purple ribbon pins yesterday. I’m hoping some of you may want one to wear to help bring attention to this mess, help educate others, and join me in solidarity.
● God’s work is evident. You can watch it happen. He knew exactly when to pull me out of studio ownership. He knew that nothing needed to really “stick” for me until all this was over. He has made tests and appointments happen faster than I could have imagined.
● I am learning my own physical limits. I’m learning about my own pride. I’m learning about how to handle my emotions. I’m learning about the fragility of my own life.
● I am so loved. I’m THE GIVER. I’m THE HELPER. I’m the MAGIC MAKER. I MAKE PEOPLE HAPPY. I’m learning how to BE loved, let others give to me, let someone else help me, let people make ME happy. It’s hard.
If you’re interested…
… here’s some more resources for learning about meningiomas.
Thank you for learning. That’s how we become aware and better able to offer compassion and assistance. That’s how we get smarter and combat being fearful. I appreciate your taking the time.
Medical Minute: Meningiomas (Video)
FREE Brain Tumor Educational Resources
(I just got my HUGE, awesome packet in the mail!)
There’s power in the purple!
One more thing…purple is my thing, right? It has been for well over 10 years now. It’s not just a physical trait of mine anymore, it’s an identity!
Sport some purple, Y’all. Wear it proudly. Find strength in it. There’s power in the purple!
#powerinthepurple
Use that # and post your pics. I can’t wait to see purple everywhere. 💜
#pray4msa #graceanddignity
Tags: brain tumor awareness, Christian mom, meningioma, meningioma awareness, mom blog, power in the purple, the more you know