Diagnosed with Meningioma in the right parasagittal frontal convexity

Posted by lctobey @lctobey, Mar 15 10:27am

I was recently diagnosed with Meningioma in the right parasagittal frontal convexity measuring the size of grape and would like to connect with someone diagnosed with the same who has already gone through the process of surgery.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

@lctobey, welcome. Fellow members like @allaboutus @ees1 @sanderjakidd and others have experience with convexity meningiomas and may be able to share more.

You might also appreciate this related discussion:
- How did you prepare mentally for Meningioma surgery?
https://connect.mayoclinic.org/discussion/meningioma-surgery/
Are you a candidate for surgery? Do you already have a date?

REPLY

Hi there I had one removed almost 2 years ago. What are your questions? Mine was the size of a lemon. Rather large. Happy to help in any way!
Cropped photos of my tumor to protect my privacy.

REPLY
@catv7

Hi there I had one removed almost 2 years ago. What are your questions? Mine was the size of a lemon. Rather large. Happy to help in any way!
Cropped photos of my tumor to protect my privacy.

Jump to this post

How did you discover it?
What was the surgery like?
Tell me about your recover.
Did you feel depressed at any given time?

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It was discovered when I started sleeping alot(like 20/22 hrs a day) trying to hold down a FT job. I am told I was sort of in a catatonic state. Stopped daily hygiene. Starting falling a bit. Would sway to the side when sitting on my bed & incontinence issues. Yes I was very depressed but had lost both parents 10 weeks apart so my family thought I was in mourning & just gave up on life. My family, friends & coworkers thought I just didn’t care anymore. Also masking this was my daughter & only grandchild moved 2 states away in between losing my parents. My granddaughter was my life. Insurance refused to pay as I was pre diabetic at the time. My family fought insurance & they finally agreed to do a CT scan. I was then sent the same day to ER, was admitted & had an MRI. With said MRI, my tumor was confirmed & I was scheduled for emergency surgery asap as my
quality of life was extremely diminished. My tumor did not enable me to process my feelings or even express sadness fully when my parents passed. Everyone thought I was apathetic. My surgery wasn’t until 28 days later due to things beyond my control. Surgery went extremely well!! I was so numb, I didn’t fear surgery at all; however I didn’t know how much it might hurt or be painful. To my astonishment it didn’t hurt one bit after. I didn’t need so much as one pain pill after. I did end up taking one a few days after I got out of hospital due to an oncoming headache but that was the one I had. I was told I could leave the morning of the 2nd day. Had surgery on a Monday and was told I could leave Wednesday. I was walking Tuesday morning with a walker & by Wednesday afternoon I walked around two full blocks solo, no walker. My shock of no pain knowing my skull was open to remove tumor still shocks me. I would have asked if there would be pain but was too numb to ask much. I took a few months to recover and probably did to much as your not supposed to bend over much or lift over 10 lbs. I didn’t life but loaded/unloaded dishwasher etc. Did some light housework, I wish I could have slept more. One side effect I still have is insomnia & I don’t sleep much anymore. I loved sleep & was know to sleep at least 10 hours in my earlier years. At least 7/8 pre tumor. That is now 5 or less. 3/4 right after surgery starting the night of surgery. I saw a sleep specialist who said my circadian clock is out of whack now. I also had an A1C from about 5.5 go to 14 and got it back down in 5 weeks after due to steroids making it go high. My peripheral vision was permanently impaired but it is not noticeable to me. I also have had some major ear loss in ear opposite side of tumor. My ability to feel and express emotions came back the night of surgery. Almost like a switch was turned on. I still have numbness in my right eye area and forehead. It is slowly getting feeling back but not normal. I had lots of numbness & odd feeling on right side starting a few weeks after surgery. My head also feels like I have many divets and my head is no longer smooth like before surgery. It feels bumpy and kinda gross truth be told. I also notice imbalance issues & most recently have started falling a lot. I need follow up MRI. I lost my job after returning to work ( was told layoff) but my feelings tell me otherwise so I don’t have insurance for follow up MRI. My outlook was good. My mother also had the same brain tumor at the same age. She was not able to return to work after hers or drive due to Menieres disease.
I also had/ still have MAJOR muscle loss due to being on bed pre-brain tumor. Life has not enabled me to do what I need to get back my pre surgery stamina/energy but I have recently taken steps to get back to my pre tumor muscular body I had. I feel blessed but definitely have reminders that I’m not exactly the same physically. I am beyond blessed & grateful for my outcome as not all brain tumors are created equal. The only thing I wish I had been told was I wouldn’t have pain after. I was terrified having 33 staples that had to be removed & it was painfully nerve wracking trying to shower and worried about hurting myself shampooing even with help. I would relaxed more as it was worse in my mind than reality. I’m still in shock and I pray I never have to go through it again. The medication after was hard for me a bit but helped lose more weight than the 50 plus pounds I lost due to sleeping like a bear in hibernation. Hope this helps! Feel free to ask any questions you might have. Good luck to you & God Bless!!!!

REPLY
@catv7

It was discovered when I started sleeping alot(like 20/22 hrs a day) trying to hold down a FT job. I am told I was sort of in a catatonic state. Stopped daily hygiene. Starting falling a bit. Would sway to the side when sitting on my bed & incontinence issues. Yes I was very depressed but had lost both parents 10 weeks apart so my family thought I was in mourning & just gave up on life. My family, friends & coworkers thought I just didn’t care anymore. Also masking this was my daughter & only grandchild moved 2 states away in between losing my parents. My granddaughter was my life. Insurance refused to pay as I was pre diabetic at the time. My family fought insurance & they finally agreed to do a CT scan. I was then sent the same day to ER, was admitted & had an MRI. With said MRI, my tumor was confirmed & I was scheduled for emergency surgery asap as my
quality of life was extremely diminished. My tumor did not enable me to process my feelings or even express sadness fully when my parents passed. Everyone thought I was apathetic. My surgery wasn’t until 28 days later due to things beyond my control. Surgery went extremely well!! I was so numb, I didn’t fear surgery at all; however I didn’t know how much it might hurt or be painful. To my astonishment it didn’t hurt one bit after. I didn’t need so much as one pain pill after. I did end up taking one a few days after I got out of hospital due to an oncoming headache but that was the one I had. I was told I could leave the morning of the 2nd day. Had surgery on a Monday and was told I could leave Wednesday. I was walking Tuesday morning with a walker & by Wednesday afternoon I walked around two full blocks solo, no walker. My shock of no pain knowing my skull was open to remove tumor still shocks me. I would have asked if there would be pain but was too numb to ask much. I took a few months to recover and probably did to much as your not supposed to bend over much or lift over 10 lbs. I didn’t life but loaded/unloaded dishwasher etc. Did some light housework, I wish I could have slept more. One side effect I still have is insomnia & I don’t sleep much anymore. I loved sleep & was know to sleep at least 10 hours in my earlier years. At least 7/8 pre tumor. That is now 5 or less. 3/4 right after surgery starting the night of surgery. I saw a sleep specialist who said my circadian clock is out of whack now. I also had an A1C from about 5.5 go to 14 and got it back down in 5 weeks after due to steroids making it go high. My peripheral vision was permanently impaired but it is not noticeable to me. I also have had some major ear loss in ear opposite side of tumor. My ability to feel and express emotions came back the night of surgery. Almost like a switch was turned on. I still have numbness in my right eye area and forehead. It is slowly getting feeling back but not normal. I had lots of numbness & odd feeling on right side starting a few weeks after surgery. My head also feels like I have many divets and my head is no longer smooth like before surgery. It feels bumpy and kinda gross truth be told. I also notice imbalance issues & most recently have started falling a lot. I need follow up MRI. I lost my job after returning to work ( was told layoff) but my feelings tell me otherwise so I don’t have insurance for follow up MRI. My outlook was good. My mother also had the same brain tumor at the same age. She was not able to return to work after hers or drive due to Menieres disease.
I also had/ still have MAJOR muscle loss due to being on bed pre-brain tumor. Life has not enabled me to do what I need to get back my pre surgery stamina/energy but I have recently taken steps to get back to my pre tumor muscular body I had. I feel blessed but definitely have reminders that I’m not exactly the same physically. I am beyond blessed & grateful for my outcome as not all brain tumors are created equal. The only thing I wish I had been told was I wouldn’t have pain after. I was terrified having 33 staples that had to be removed & it was painfully nerve wracking trying to shower and worried about hurting myself shampooing even with help. I would relaxed more as it was worse in my mind than reality. I’m still in shock and I pray I never have to go through it again. The medication after was hard for me a bit but helped lose more weight than the 50 plus pounds I lost due to sleeping like a bear in hibernation. Hope this helps! Feel free to ask any questions you might have. Good luck to you & God Bless!!!!

Jump to this post

What type and grade of tumor did you have? I napped a lot prior to surgery and now napping is reduced by 75%. Awaiting next MRI in spring after 35 proton treatments. I have a grade 2.

REPLY

I have a grade one. Next week MRV to make sure the main nasal vein is not restricted.
What are proton treatments?

REPLY
@psawa

What type and grade of tumor did you have? I napped a lot prior to surgery and now napping is reduced by 75%. Awaiting next MRI in spring after 35 proton treatments. I have a grade 2.

Jump to this post

WHO grade 1. Did you have yours removed or are you waiting to have it removed? How was your surgery if you had it removed.

REPLY

Partially resected. Surgery was fine but couldn’t get it all.

REPLY
@psawa

Partially resected. Surgery was fine but couldn’t get it all.

Jump to this post

Did you need to have all your hair removed for the surgery? How long before you felt like yourself again. Will there me some kind of treatment because they where unable to remove all of it.

REPLY
@psawa

Partially resected. Surgery was fine but couldn’t get it all.

Jump to this post

Do you have any lingering defects? How is your mental state? It can be a hard to live with all the things that come along with a brain tumor. I lost my job and have not quite recovered emotionally with that & I am still looking to work that paid comparable to what I earned before. And I still have no health insurance but I am working on that. Do you have a support group in your family & friends? What I does your prognosis look like?

REPLY
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