Had my first 6-month follow-up MRI/contrast and there was no change in size or symptoms, which is good news. I also had the MRI done with a machine that is a lot more clear. Even I could easily see the improved clarity.
My neurosurgeon who specializes in these types of tumors said that is a pretty good indication that I do not have a "fast grower". That's not to say there is no growth. We will need another scan in November which would mark 1 year since original discovery. Then we'll have three data points and a much better indication if it's stable or growing. He also said anything under 0.5mm growth rate is really hard to see, which is why we need another scan in 6 months.
Interestingly, he did take a look at an MRI I had way back in 2004 (~19 years ago) just prior to my nose surgery for a deviated septum (broke my nose a few times playing hockey back in my younger years). He said no one would have known to look for it back then, and he's not even sure there is anything there, but he said if you really zoom in and take a look in this area where my tumor is, he said you might very slightly be able to see something "abnormal". But he said there is no way to definitively know if this extremely minor abnormality that might not even be anything was "it". There was no contrast administered with the MRI back then, but he found that rather interesting.
He strongly recommended we continue with the "wait and watch" approach. I agreed that this is the best course of action.
Below are a few follow-up questions (answers are in his words, but paraphrased). Thought I'd post these for other people reading the thread, or who will be perhaps years from now.
Question #1: Is there any chance I have one growing in the other ear? I'm a bit OCD but seem to be occasionally getting extremely high-pitched tinnitus in the unaffected ear.
Answer: Everyone has a bit of tinnitus from time to time. Especially as you get older. Your anxiety is driving you to notice every little tiny itsy-bitsy thing, which is why you don't notice anything abnormal when you forget to test your symptoms. Moreover, people who have VSs in both ears have a condition called NF and the tumors always present in both ears at the same time. There is absolutely no indication you have anything in the other ear. And people who have NF usually present with symptoms much earlier in life (early 20s).
Question #2: Is it possible I may not have to have surgery or radiation at all?
Answer: Yes, and this first scan is a good indication that the outcome might be trending in that direction. It could be 10 or 20 years or perhaps never before the tumor gets to a size where you need to act. Or it could very well stay this size forever. We'll still do scans every year for at least he next decade to monitor for any change. Now ... just because it's not growing doesn't mean you won't have any new symptoms as time ticks along. But any treatment you get will have negative side affects. In your case, surgery will render you deaf in the right ear because the translabrynth approach is the only option. Gamma/Cyber treatment will most certainly cause some hearing loss because of the tumor location, but it could also cause facial nerve issues, vestibular issues (vertigo), and/or trigeminal issues. At this time I feel it would be a serious and unnecessary risk to treat the tumor given it's only 6x4mm and at this point appears stable, or at worst growing very slowly. And in 10 years, there could be a biological or gene-targeted therapys that could work far better than the conventional approaches used today. In 20 years, I'm almost certain there will be better solutions than cutting it out or irradiating.
Question #3: If I have another sudden hearing loss episode, do I call you or start prednisone again?
Answer: Yes, please call or just walk-in to the office so we can do a hearing test. It would be nice to get a baseline of your hearing while the symptom exists. Especially if you continue to be the odd case where your hear comes and goes. As of right now at this visit, your hearing is perfect. As for prednisone, we can consider that if your hearing loss gets "stuck" and doesn't start improving after a few days like before. I'm reluctant to use steroids because they can have unintended consequences, especially if using for long term. But I just want to remind you that just if you have another episode of hearing loss due to the tumor doesn't mean it all of a sudden started growing fast. That would be extremely rare. You can have hearing loss and other symptoms even if it's not growing.
Question #4: This is causing me a lot of stress and I think that might be causing my eardrum to spasm and sound like a bug is knocking on my ear drum. lol. This is not a tumor related symptom, right?
Answer: Absolutely stress related (he said what's causing it but I don't remember the fancy name of the nerve/muscle/condition or whatever. Once the stress is gone, it goes away ... and it did). Remember, this isn't a death sentence. You don't need to be that worried about this. You're in a good spot right now based on this last scan. Any number of other health things can arise in the coming years but don't get stuck in the "what if's". Live life!
I'll post again in 6-months after the next scan, or if I have another symptom.
Best wishes to everyone!
