Looking for education and support.

[PointedCricket]

Hi All, I am sorry we meet here because of our circumstances. However, we are obviously here because only we know what it is like knowing there is something interfering with Air Traffic Control! It was several months after my "lesion" was identified and seeing a Consultant, even then I didn't leave feeling reassured.

My Benign Menigioma is sitting on top of my brain stem, pressing into the "Pons" area; because of this they strongly advise against surgery. (To quote my consultant's team member, "We are talking feeding tubes ect".) Right?! For that reason, I support that advice. The next step is to monitor it's growth, currently 1.6mm/1.4mm/1.6mm.

I appreciate this is reasonably small and benign, that being a relief as I had Melanoma 10 years previously. He sugested instead of yearly scans, he would like 6 monthly at this stage just to be certain. I was also told that radio therapy isn't an option, due to the location. A bioposy is also not on the cards... all because of it's location. If they are going in, they're going in to remove it.

SO, SO many positives, and I am truly grateful; yet PETRIFIED! I am alone, I have no one to talk to about this without dragging all my other ailments in. I am really scared, it is the elephant in the room. I need to talk about my Menigioma, and I need to know stuff.

🖤

[Trufle]

Hi, I know it is scary and I completely understand, I had a craniotomy and resection of petroclival benign meningioma in May 22 and mine also sits on the brain stem! They were able to remove some but not all because of risk of stroke etc if they got too close to brain stem 🤷‍♀️ I am now on my 5th week of 6 weeks radiotherapy as although it has only grown a mm in 14 months they want to stop it growing as pushing my brain to the side which has side effects, although they won’t know for a while as it is soo slow growing - another MRI in 6 months. In the meantime I can only put my trust in the professionals, feel a fraud because it is benign and try not to think about if the radio doesn’t work as being on brain stem they couldn’t operate again, even if I wanted them to! I take each day as it comes! Happy to chat more if you feel it would help 😊

[PointedCricket in reply to Trufle]

Thanks Trufle... I appreciate this. I think I'm doing quite well mentally, I think it's the isolation after the noise (noise being the news). Suddenly your sat there in the dark alone and wondering if the lesion had anything to do with the last 10 or so years of side effects. They've already retraced their diagnosis of Fibromyalgia (thankfully!) Oh, we think it's M.E.

I sigh and say... just stop now. I am 50yrs young, with an already overactive mind set haha

I too am happy to befriend you. How are you feeling today? ☺️

[Trvlr]

Sending you a hug, and I hope your are surrounded by love, even if it comes from within.

[PointedCricket in reply to Trvlr]

Thank you Trvlr, I am receiving gratefully and you're in my thoughts