Thursday 01 February
We saw a third and final surgeon and I am delighted to say we got some clarity. He agreed it was on the verge of being too big for hearing preservation, but it was still doable. He said if that’s the route I decide to take he would send me to surgeon ‘operate’ as he is better and more experienced at this particular surgery (Middle Fossa). He advised there is more risk to the facial nerve as the entry angle means the nerve is between the tumour and the surgeon so it depends if I want to risk that to have a chance of keeping my hearing. However, he felt my path should be to watch and monitor if it grows. Although he didn’t agree with the way surgeon ‘watch’ went about advising me, he did say it would give me quality of life for longer as they usually grow slow.
He said if it shows signs of rapid growth and becomes too big for Middle Fossa then he would operate with Translabyrinthine approach, although this would mean losing hearing all together in that side. He went on to reassure me that his team have successfully operated on people much older than me and that I shouldn’t be concerned about waiting in that respect.
Leaving his office an hour later George and I felt so happy. I turned to George and said “I don’t know why I am so happy, I still have a tumour”. I guess I felt relief that we had validation that surgeon ‘operate’ was a good surgeon and not a ‘cowboy’ as surgeon ‘watch’ suggested and also relief that I did have options; I didn’t need to be railroaded into a decision because one particular surgeon thought that was best. He advised us of his opinion but also offered support to us no matter which route we decided to go.
I have spent the last week or so trying to make a decision; operate now with Middle Fossa or wait and operate in how ever many years with Translabyrinthine. The decision facing me caused me quite a bit of anxiety. I found it difficult last week to concentrate at work. All I wanted to do was to be at home without having responsibilities to take care of, nobody wanting things from me, needing my attention or asking me to do things that were challenging to my already stressed brain. I spent everyday wishing it was the weekend and struggled with basic tasks at home and did not want to reply to messages or emails. I felt George and I had hardly spent any time together as we had been busy over the weekend and so I asked him if we could make no plans the next weekend so I could have space to breath and think. I had suddenly come to feel really alone. Nobody except me could make the decision.
I decided I needed further clarity around the facial paralysis stats that surgeon ‘operate’ had mentioned back in January and so I emailed his medical team. The next morning he called me up and went through them clearly over the phone. I spoke to him about the other 2 surgeons I had saw and he reassured me that if I decided to wait I could re scan in June (6 month mark) and even if it had grown another 2mm I could still consider Middle Fossa surgery. But, he also supported long term watch and wait if that was what I wanted. I now felt I had 2 really skilled and supportive surgeons by my side.
So, as promised, George and I spent a quiet Friday and Saturday in piece, watched movies, relaxed and by Saturday night I had decided; I will wait for the 4 months to pass by and have a 6 month scan. I am happy with this decision as I feel it would be reckless to go straight in for invasive surgery if it was not even growing and if it grows beyond the size where my hearing can be saved then so be it. I will deal with that if the scenario occurs. One thing I have come to realise is that some or all of the issues I am concerned about (single sided deafness, vertigo/balance problems, facial paralysis) may happen whether I operate or not so I may as well take the time to see what exactly it is doing.
I am fortunate that I have an amazing supportive husband who has been by my side through all of the appointments, tossing and turning when I couldn’t sleep, discussing the pros and cons of different approaches, hugged me when I cried and laughed when I made inappropriate tumour jokes. I want to use this post to say thank you George, I love you with all my heart. Nine years on and I still get butterflies when I hear your key in the door, I get excited to have movie nights with you and you make me laugh on a daily basis and what I love about you most is when I was worried about facial paralysis and said “but you will have to look at me” you responded with “I don’t care about that” and I knew you meant it.