Hi...I can feel your frustration and fear.
I joined this site in July after my diagnosis of a 2.8 x2.6cm left AN that was pressing on my brain stem and cerebellum. At the time of diagnosis I had no voice recognition in my AN ear and some tinnitus but no other symptoms. I am based just outside of Toronto, Ontario, Canada.
In my search for my treatment option, I too had conflicting opinions. My ENT sent me to a neurosurgeon who recommended "watch and wait". My ENT insisted that this guy was the best.
I then asked for consults to a GK specialist and an Otolaryngologist recommended to me by someone in this site. I met with the GK specialist and a neurosurgeon at the GK clinic who conflicted each other - the GK specialist insisted that GK was a good option for me but the neurosurgeon, standing right next to the GK specialist, said that there was risk due to the size and location of my AN.
Then I met with Dr. Rutka (Otolaryngologist) who said that the size and location of my AN put me well beyond "watch and wait", and that something needed to be done. He stepped me through all treatment options but his recommendation was for Translab approach surgery. He referred me to the neurosurgeon (Dr Tymianski) that he works with and I met with him a week later. Dr Tymianski also worked with the same GK clinic that I had consulted with but said that due the the location of my AN, GK was high risk and recommended Translab surgery to remove the tumour. Translab approach (vs middle fossa or retrosigmoid) was recommended since hearing loss was not an issue and this approach provided an easier and better view of the tumour for removal.
For each consult, I had a detailed list of questions about everything from potential risks, to expected recovery, to their definition of a "successful outcome", to how many of these procedures they had done before and how many met their definition of a "successful outcome". As I had been told numerous times, the 2 most critical factors to a good outcome was the size/location of the tumour and the experience of the treating physician. I was fortunate in that I was able to get these consults all scheduled within a month.
So ultimately I decided on surgery with Drs Rutka/Tymianski. Not only did I believe that they were most experienced, but I also just felt most comfortable and confident with them.
I had the surgery on Monday, October 27 - it was 9 hours, Dr Rutka had to remove my ear canal to make more room for Dr Tymianski to get at the tumour, but they got it all, and I have absolutely no eye or facial issues at all. I was up walking the next day on Tuesday morning at 8am with Physio. Balance and dizziness were not and have not been a problem. Later that same Tuesday I did 2 flights of stairs unassisted ( with Physio guy watching) and then passed a series of balance tests administered by Physio and passed them all easily. Aside from nausea immediately after waking from surgery, it wasn't and hasn't been a problem. I stayed in ICU after surgery for monitoring until my discharge from hospital on Wednesday morning (48 hours later) and have been doing absolutely fine. I was back driving at 1 week post-op.
I was back at all of my pre-op activites at 3-4 weeks. I am now 6 weeks post-op and am doing great. Most days I forget that I had brain surgery just 6 weeks ago.
The time to do the research and Dr appointments needed to make your treatment decision is a stressful and frightening period. But somehow you will know what is the best course of action for you. Just stay positive...ask every question you can think of during your appointments...
The only other advice I would give you is to prepare yourself physically prior to your surgery (if you decide to have surgery) - that is, get as physically fit as you can and do daily vestibular exercises to train your non-AN side of your brain to compensate for any balance issues related to your AN.
I wish you the best of luck on your journey...happy to chat further if you want...
