Hi there, I first posted on 7th November my situation with AN diagnosis. Since then, I’ve had many appointments and have been fortunate to book a surgery. Here’s my updates so far.
Surgery booked for 4th January. Will need to get another MRI which is more detailed and some blood tests right before the surgery.
I’ve been really anxious at the thought of being put to sleep so the Anaesthesiologist wrote me a “pre-med” tamazepam to ease the nerves on the day.
I’ve been ordered off all regular vitamins until after the surgery as some can have blood thinning effects and other effects that would be unhelpful to surgery.
Drs have confirmed they will be doing retrosigmoid approach, which is going behind my ear and removing a panel of skull to access the tumour.
So far they booked me 3 nights in hospital (seems short). The admissions nurse said I will spend first 1-2 nights in the High Dependency Unit (HDU) and then all going well move down into the regular neuro ward.
In regards to outcomes of surgery, I’ve heard varying degrees of probability for permanent facial paralysis. The ENT said 40-50% chance of facial paralysis - much more than I initially heard which was 30-40% chance. But I think this probably means 40-50% chance of *some* degree of permanent facial paralysis, which is very different to 40-50% chance of total facial paralysis. Additionally, hearing loss is almost ensured, and hearing aids are not an option (which was news to me). The ENT says this is because hearing aids are for the cochlea which is the reason most cannot hear. However, all my hearing apparatus is healthy (including my cochlea) it’s the nerve which isn’t going to work. I think of it like plugging something into a power point which has no electricity connection. That was not great to hear. I really love music, it’s a big part of my life and source of enjoyment. It’s going to be an adjustment to hear music with one side from surgery onwards. I understand there’s a hearing aid called CROS, which has a microphone on the hearing loss side and a speaker into the fictional side, so then the functional ear can hear anything coming from the hearing loss side. This could be useful in some situations such as meetings, but I think it’s not really going to be that helpful for a lot else.
I’ve been given medicated sponges to use the night before surgery and for the morning of. Wash head to toe with the soap (including hair), use a clean towel, and sleep on clean bed sheets. Then in the morning repeat as well as use another clean towel.
Fasting - no food from midnight. Only 200mls clear fluids until 2 hours before surgery. No gum and no lollies (dang it). I’m going to be so parched.
Will receive a call from a nurse the day before to confirm admission time, likely very early in the morning. It’s going to be a big day.
I am able to have part of my hair braided away, so I will do that, and just leave the “under-cut”portion free. This way I won’t have to worry about washing/brushing my hair after surgery (my hair mats really easily).
I’ve received some really good recommendations of what to pack from ANAA group on FB so I have made packing lists already and purchased some items like neck pillow, eye mask, ear plugs, and a grabber tool. I also bought an iPad pillow and a long phone charger cord.
Interesting info from the recent ENT appointment. They tested my hearing nerve reflexes and they were shocked to see it’s still fully responsive. The audiologist, ENT and accompanying doctor were in shock. Unfortunately that doesn’t increase my chances of being able to hear post-surgery, but they just said almost everyone with AN has a non-responsive nerve reflex. Another thing, since I’m 23 and these tumours are usually diagnosed for those in 40-50 age range, the ENT has ordered a precautionary spinal MRI to see if tumours have developed anywhere else. I feel good that the ENT has taken extra steps to check for anything else. I didn’t know that may have been a concern. I’m not worried about that at all, I figure there won’t be anything, but it makes me feel less anxious to know that we will be checking other areas too just to be safe.
Did you know the trigeminal nerve is responsible for facial sensations and the facial nerve is responsible for facial movement? I thought the facial nerve was responsible for sensation & movement. So the reason I can’t feel sensation properly on some parts of my face is because the tumour is also putting pressure on the trigeminal nerve.
Other symptoms like headaches and balance issues aren’t expected to resolve after surgery. Which is kind of a bummer. This surgery is bittersweet in that I’ll remove a tumour which isn’t supposed to be there, but then create other issues and also not fix any existing issues either.
I am engaged with a neurological physiotherapist at Advanced Neuro Rehab (thanks to Katrina Williams on ANAA - nobody else mentioned this service to me, not even doctors surprisingly) who does all things related to vestibular therapy (balance, coordination, etc) and they also assists with facial training for paralysis.
So I’m pretty much all set, now just waiting for the day to come and trying to stay strong and in good health until then.
Thanks to everyone for having me in your prayers. It has given me strength. Please pray for good health and a strong body and a smooth surgery. I’ll need it.
Will keep you updated as I can.
Jordy.
