Radiotherapy recommended.. but I'm worried about the side effects

[Lindaallwood50]

Hi.

I have been told my tumour is now growing but slowly and radiotherapy has been recommended. I'm worried as they say that my right hand side of my face could be affected and my balance could be worse. What side effects have others experienced?

[Luna1956]

Hi I was being monitored since 2016 and had significant change last year and was advised to have Stereotactic Radiosurgery which I had in December.

I was quite anxious about the mask but that wasn’t as bad as I thought it would be

My dizziness stayed the same for quite some time afterwards and had hardly any other symptoms from the radiotherapy apart from my tinnitus being constant which I’m getting used to

Lately dizziness has been worse but I have been recently diagnosed with Superior Semicircular Canal Dehiscence as well so I think that is causing my dizziness now instead

I get dizzy when I sneeze and hear my heartbeat in my head on and off alongside the tinnitus which is so irritating

[Lindaallwood50 in reply to Luna1956]

Hi

[Lindaallwood50 in reply to Luna1956]

Hi..thanks for the reply.I must admit that I am concerned about the mask ..I imagine something like Man in the iron mask!! Non of my symptoms are bad at the moment apart from deafness in the one ear and loss of balance abd a bit of numbness in my lips ( although apparently my tumour is no where near my facial muscles) . Terrified I will have facial paralysis

[Daisymeadow]

I’m in the same situation. It is such a hard decision to make because you can’t really predict the outcome of either choice.

I’ve been weighing up the risks. I was told facial paralysis risk is 20-30% with surgery but only 5-10 with radiation. I’m concerned about my trigeminal nerve as my AN is pushing on that now. Neither choice seems to be better than the other.

I’m really not sure how we decide. I’m not helpful at all 🤣 but helps to know others are going through the same. Are you any closer to deciding?

[Lindaallwood50 in reply to Daisymeadow]

The radio therapy for me I think ... it seems less risky ...so worried about having impact on face though ..just vanity!!

[Daisymeadow in reply to Lindaallwood50]

I’m thinking the same. It’s the facial nerve I’m desperate to protect.