Acoustic Neuroma Update

I actually started this post days and days ago - but it got way too long, it even bored the crap out of me! So, while I should be posting about several other topics like Deckles birthday last week, this one will be only about my brain.

I am actually doing much better than my original emotions way way way back in late November and early December. While I fully grasped at the time that this was a slow growing brain tumor that had pretty much no chance of shortening any aspect of my life, I was having a few difficulties overcoming the idea that I had a medical issue, and it happened to be a brain tumor (well, to be honest, just a skull based tumor). So, one month later, I am feeling much much better and almost bored with the whole thing.

I did have a few interesting tests last week to test the vestibular nerve. The name of this thing is a misnomer, it isn't an acoustic neuroma (implying the involvement of the acoustic nerve) but a vestibular schwanoma - implying the involvement of the schwann cells or nerve sheath of the vestibular nerve. It just squeezes out the acoustic nerve and permanently damages your hearing.

While these tests were interesting - the VEMP test (all kinds of electrodes measuring some sort of reaction) and caloric test (hot and cold water shot into your ear ... secondary benefit of seriously cleaning your ears!) - I am still haven't figured out what they prove. My balance is currently perfect on both sides. Nevertheless, surgery will severe the nerve so it will be eliminated with any form of surgery. I guess it does show that should I have surgery, I will have serious serious balance issues in the first few days (weeks?) post-surgery as the brain reacts quite strongly to the newly removed vestibular nerve.

I did learn that my ENT encourages no treatment until the tumor size could impinge on the brain stem. In my case, the tumor would need to grow out of the internal auditory canal of the inner ear and into the cerebellopontine angle - I gander at least 2cm worth of growth. With an average growth of less than 2mm/year, I could have 10 years+ to wait before I need to do anything. I don't actually believe my tumor will grow that slowly but it is possible.

However, regardless of the size or growth pattern of the tumor, my hearing will continue to disintegrate - how fast, like tumor growth, is absolutely unpredictable. It doesn't matter if I do nothing, if I choose surgery now (or later) or pursue different forms of radiation treatment. The time frame may be different, but hearing loss is quite unavoidable.

I learned that with acoustic neuromas, not only does the volume you hear decrease, but so does your ability to actually identify words. I currently have a pure tone average of probably 25db (so mild hearing loss) on the left side and word recognition of 100% - so probably still better than a significant majority of the population. The best surgery approach to 'preserve hearing' on average allows the candidate to have hearing of about 50db and 50% word recognition, otherwise known as the 50/50 rule. While this is, on average, 'preserved hearing' - what it implies is that you need to crank up the volume, and even once cranked, you only recognize half of the words spoken to you. Pretty darn crappy if you ask me. On balance, better than some of the other surgical options which reduce you to 'SSD' or single sided deafness - where you have absolutely no hearing off one side and thus, obviously won't recognize one word either.

So - my options pretty much are:
1. Wait and watch (MRI already scheduled for May 21st) and slowly watch my hearing disintegrate.
2. Have surgery in the near future - the approach to 'preserve hearing' will on average meet the 50/50 score (not so good) with potential real risk to the facial nerve
3. Have surgery that won't preserve hearing with the result of SSD but with minimal risk to the facial nerve
4. Have stereotatic radiosurgery - which has few short-term downside risks but MAY NOT arrest the growth of the tumor and MAY lead to long term neurological issues 20-30 years down the road due to radiation exposure. (Risks are pretty much unknown beyond 10 years). Hearing loss is slow onset but few patients maintain hearing above the 50/50 rule after 5 years.

I guess my main goal is to avoid chronic pain and facial injury for as long as possible - which may be a very very long time. The MRI is scheduled, and now I just sit back and wait, and wait, and wait.