I am about to start a six-week course of fractionated brain radiotherapy having been diagnosed with a medium sized Petroclivial Meningioma which extends from the internal auditory meatus to the cavernous sinus and into Merkels cave. It distorts the pons, compressing it to the right.
It was diagnosed when I began experiencing double vision but recently it seems to also be affecting my balance.
I go from feeling confident that it is not worse to feeling anxious that the radiation is likely to impinge in my brain and could cause problems later on.
I wondered whether any of you have gone through this type of radiotherapy and could let me know about your experience of the process and side effects and whether you have any helpful advice. I have been told to expect extreme tiredness and possibly headaches.
Thanks
Written by
eblu
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I’m also just about to start a 6 week course of radiotherapy. I had surgery 6 months ago to remove the tumour but post surgery tests showed it was Grade 2 so radiotherapy was recommended. I have always thought that whatever I was faced with I would do whatever was necessary for my health, but I am now worried about more serious side effects of the radiotherapy. I am prepared for tiredness and loss of hair, but can anyone share their experiences?
Hello can I ask how long you waited to be seen by oncology ? I had my surgery to remove my grade 2 meningioma in March and I am still waiting to be seen . I’ve had two clear mri’s since March .
I am very worried about the possible side effects from radiotherapy too including not being allowedd to drive for another year once radiotherapy would finish .
The waiting is the worse part .have they said how long you won’t be able to drive for afterwards ? I think mine will be another 12 months from when it finishes ..
The not being allowed to drive is the worse part for me now .
At the first appointment I was told 12 months from when the radiotherapy finished, but at the second appointment they said 1 month so I’m not sure now! If it’s 1 month it will fall within my 12 months post surgery time.
Oh that’s interesting to know , would you be able to post when you know for sure , I am counting down until March when my 12 months are up after my operation and dreading another 12 months .ive had a follow up letter from my surgeon saying I am waiting to be referred to oncology and he wants to see me January for another mri which will be 6 months from the last one .
Did you have much tumour left ,
Are they offering you the radiotherapy because it’s grade 2 ?
Yes it’s because it’s grade 2 they’re offering radiotherapy as a preventative measure, the majority of the tumour was removed, just a few strands left in a major vessel.
I’ll let you know when I definitely know about driving.
In September 2022 I underwent a craniotomy for the resection on my 6cm meningioma discovered following my symptoms of confusion and inability to process thoughts and actions.
The surgery was successful and I was pleased to learn that all but my friend’s “root” had been removed. Subsequent MRIs revealed no signs of growth until May this year. I now have an appointment this week to discuss the ongoing treatment of radiotherapy. All good I’m sure in theory but like you say, the impact will bring positives and negatives - all rather daunting to consider a treatment that zaps part of your brain to deal with its uninvited guest, but may well impact surrounding cells that I value!
Like you I would love to hear from someone else who has faced this prospect.
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