This week has been a roller coaster of emotions after much awaited appointments with the pain clinic, psychiatrist, ENT and neurosurgeon.
After last weeks disappointment with not seeing Professor Kaye, I wasn't feeling confident that I would see him this week despite an appointment being scheduled. Turns out it was my lucky day. Professor Kaye talked us through both surgery and radiation. He admitted that he was not a fan of radiation as the likelihood of controlling the growth of the tumour in a NF2 patient is substantially less than in a patient that doesn't have NF2 and there are increased risks. The surgery will be translabyrinthine craniotomy (behind the ear). Although there is only a 5-10% chance of having a permanent facial palsy this is something that worries me the most. At the moment my disability is hidden. I don't want people to feel sorry for me or, speak to me like I am dumb because I have a droopy face. When there is so much more that I could worry about, like death, it makes me appear incredibly vain. There may be a possibility that have to leave some of the tumour to preserve the facial nerve function. Radiation may be necessary in this case to prevent further growth. If all goes to plan (with no complications) then I should be in hospital for a week and 8 weeks off work. I have been put on the waiting list, as a catagory 1, but I have opted to wait longer to ensure that it is Professor Kaye that does the surgery.
The ENT, Associate Professor Robert Briggs, agreed that surgery was necessary. I am disappointed that he doesn't want to consider the ABI at this stage due to my level of hearing on the right side. It was also suggested that I consider radiation on my good side to prevent growth and hopefully retain my hearing. That of course comes with risks, one of them being damage to the hearing that I have. This is not going to be an easy choice to make and it's not something I need to worry about until after surgery. My thought is that if I need to have radiation because they were unable to remove all of the tumour then I could consider having radiation on both sides.
The appointment i think I benefited the most from was the Pain Clinic. I have heard of the word stoic used before but I never actually knew what it meant. The pain doctor today, who after hearing my history, said I presented as someone who is very stoic and she commended me for it.
"a person who can endure pain or hardship without showing their feelings or complaining."
I don't think this is me at all!
The specialist was my age and was easy to interact with. After a very thorough assessment it was recommended that I increase the dose of the antidepressant to combat the nerve pain, invest in a TENS machine and use a medicated patch with a local anesthetic for the tumour on my toe.
After a very full on couple of days I was mentally exhausted. All the information going around and around in my head. I'm scared of what the future holds. I have a lot of information to digest and I am sure that it will play on my mind for weeks to come.