Watch &Wait

[Spanieldoggo]

Hi, im a 54 year old female who has recently been diagnosed with a meningioma situated opposite my right temporal pole. It was an incidental finding after having a really bad headache and was sent to A&E where a ct scan showed up a small lesion. An MRI scan followed and highlighted the Meningioma. Since my diagnosis which has left me traumatised i have been worried about the watch and worry as i call it approach. Im told its about 12mm in size which is probably very small in comparison to other peoples but its the not knowing if its growing until my next scan in july. My headaches were not caused by this tumor according to my neuro surgeon neither is the whoosing noise in my right ear. Has anyone else had a similar experience of non related symptoms. ?

[Bananaboy1]

Yes! I was diagnosed with two meningiomas 2 years ago. One was removed and the other one is still there. I have terrible headaches which wake me at night pounding. I have heard that this is typical for someone with a meningioma as the pressure in you skull is increased. I also have issues with stuttering and getting my words out which I never used to but apparently because of where the growths are this is not the cause.I have worked on trust and acceptance of who I am now compared with who I was. After all we are all on a knife edge of health all the time but only some of us get the reality check and are aware.

I'm sorry you had the trauma of the diagnosis on top of the accident and if I were able to offer you and advice it would be to get help with the trauma of it on an emotional level and invest in trust. Not easy when it's a watch and wait but I am 2 years post op now so can have a more leveled view I suppose. Really not discount ing the trauma of it all. Good luck and sending love. X

[Spanieldoggo in reply to Bananaboy1]

Thank you for your reply. Im sorry to hear you had two of these gremlins as i call it, good that you had one removed though. I work for the nhs and have reached out for counselling through them however as ive had some help back in 2018 when my mum died on my birthday and the issues with family im not entitled to any more, so i will have to go back to my GP. Everyone has very different experiences and side effects from these growths from what ive read but you have been the first and kind enough to respond and i would like to thank you for that. I hope you get sorted with your symptoms and recover like we all deserve to do .

[snowleopard41]

Please try and stay positive, the brain is very resilient and can cope with being squashed. Mine did and it was being squashed by a very large meningioma causing an 8 mm mid line shift. I can't help with your non related symptoms, I didn't even have any of the listed symptoms, just my bike helmet wasn't fitting me properly.

I only had to deal with knowing about the tumour for 2 months, when the GP broke the news I knew that the only route forward would be a very large hole in my head, sure enough that's exactly what happened 8 months ago.

I found spending time in nature really helped, zoos, arboretums and bird sanctuary. At this point I could no longer drive, finally got my licence back yesterday, if your still allowed to drive and fly then make the most of it.

I found sleeping tumour side down better so I was panicked if I woke up with pins and needles in my arm, I had just slept awkwardly. I wish I had invested in a silk pillow case, now I have spent 8 months sleeping on the same side I definitely have more wrinkles on one side of my face.

I'm in my early 40s If I had been closer to 60 I don't think I would have returned to work, I have only just gone back. Having a craniotomy does take some getting over.

Refocus and do things that bring you joy.

[Spanieldoggo in reply to snowleopard41]

Thank you for responding to me. Ive been living in this little unknown bubble since being diagnosed and its a scary world. I keep seeing more and more information which i dont think is helping. Its one thing to be educated about these tumors but the more i read the more it takes you into the unknown. Ive read that these tumors are likely to be hormone related and that women with these meningiomas may go on to develop breast cancer or fibroids of the womb. I just want to deal with one thing at a time and this is more than enough for the minute. Only time will tell. Im glad you have come through the other side of your surgery its reassuring to hear so many peoples recovery stories.