Newly diagnosed

[Rfc9]

got diagnosed 3 weeks ago l am awaiting on another MRI scan with contrast this time, haven't had many symptoms apart from headaches anyone else in the same situation would love to hear from you as l am so scared of what might be ahead of me.

[Henners1]

Hi,It is a bit of a shock when you hear ‘brain tumour’ for the first time.

I was diagnosed with two meningiomas about three years ago.

No symptoms - I was taking part in some research involving being scanned so it came as a surprise.

One was around my optic nerve and carotid artery so that was removed within a month or two.

I recovered quite quickly and the main issue was tiredness, post op, but this eventually wore off.

My remaining meningioma was on a watch and wait (monitored both regular scans) and it now appears to have grown a bit so I’m waiting for more surgery. Still no symptoms.

I’m a bit apprehensive about surgery as you would for any surgery but since it all went very well last time, I assume it’ll be the same 😀.

After your MRI with contrast, I expect the neurosurgeon will meet with you and explain what’s going on and whether it’s best to watch and wait, or to think about surgery.

All the best 👍👍

[Rfc9 in reply to Henners1]

Thank you so much for sharing this with me much appreciated.

[Dymphna19 in reply to Henners1]

Hi Sorry only just seen your post. I was diagnosed end of 2019, but am on watch and wait. The only symptom I had was a bit of facial sensation, like when you have been to dentist and injection is wearing off. I have yearly MRIs, with contrast. No growth so far but yes it is all a bit scary. Hope you get on ok.

[Eyla123]

Hi Rfc9,

I recently was diagnosed earlier this year and just had my surgery 6 weeks ago. My symptoms involved headaches, muscle tension/knots in my neck, trap and jaw, I also was experiencing “temporal seizures” for the last 1.5 years leading up to my diagnoses.

I’m glad to hear you’ve caught the meningioma because often times they are hard to detect!

It’s completely normal to be scared. I remember being terrified, angry, frustrated, sad, upset, and every emotion all at once! I hated having “tumour” as part of my daily vocab. And you know what? All of this is completely normal to feel and you have every right to feel that way!

If your neurologist suggests a surgery, on average they can take 6 hours long BUT in some extremely extensive cases like mine, 12 hours. So maybe prepare you family members so they aren’t too stressed out while waiting for you like mine were.

I’ll share something with you that I believe helped me stay strong throughout my surgery and is currently helping me to remain strong and get stronger during recovery. Do not underestimate the power of your mind. When I was diagnosed with my tumour, I only had 1.5 months to prepare for surgery. I used that time to focus on mind-body-healing so that I could bring my inner self to a peaceful state for surgery day. This involved releasing out any suppressed resentment/anger, meditation, talking to someone, and having a lot of self respect for myself to really recognize the strength my body has. I’m not saying this is “the formula” to obtain inner peace. Each person has their own method and that’s something you’ll figure out too!

I know it’s scary in the beginning, but you’ve got this!

[Rfc9 in reply to Eyla123]

Thank you so much Eyla for sharing your experiences much appreciated the waiting is the hardest thing.

[Dymphna19]

Hi Sorry only just seen your post. I was diagnosed end of 2019, but am on watch and wait. The only symptom I had was a bit of facial sensation, like when you have been to dentist and injection is wearing off. I have yearly MRIs, with contrast. No growth so far but yes it is all a bit scary. Hope you get on ok.

[Dymphna19]

Sorry meant to reply to Henners. I am useless at this social media stuff lol

[Dymphna19]

Sorry my message was for you. Think I will give up on this messaging mullarky for today, all the best to all x