I went up to Johns Hopkins on Wednesday to meet with both Dr. T and Dr. C. Dr. T said that everything looked fine and that the abnormality on the MRI in the area where I had the tumor is just scar tissue. He said that my scar looks good, and he asked about my family. All in all, it was a pleasant, five-minute visit, and I don't need to see him again for two years.
Dr. C reiterated that the spot on the MRI was only scar tissue and showed me a printout of the scan so that I could see the spot in greater detail. He also compared it to last year's MRI and said that it's unchanged, which is another indication that it's just scar tissue and nothing to be concerned about. He explained that the MRI contrast travels through blood vessels and lights up areas with a large concentration of blood vessels like tumors. Scar tissue also lights up because it's an area where the blood vessels were messed with during surgery. I asked if it would ever go away, and he said that it is unlikely to go away completely, but it doesn't pose any long-term problems.
He also tested my balance by doing the head thrust thing where he turns my head really fast and watches my eyes to see how well they're able to stay looking at the tip of his nose. My balance continues to compensate really well, and he has to "trick" my vestibular system into righting itself more slowly than normal (he explained this to the med student). I asked Dr. C is there is anything else I can do to further improve my balance, as I would like to be better able to look over my shoulder when I'm riding my bike without worrying about losing my balance. Overall, he said, you just need to practice more, and that he would recommend doing tai chi and yoga in part for the balance practice and also for the core strengthening. If you strengthen your core, you'll be able to right yourself quicker and reduce any wobble. That made sense to me, and I downloaded a yoga app and a tai chi app when I got home. I have yet to use them though...
Dr. C asked if I had changed my mind about a BAHA system, and I said no, that I seem to be getting along fine without it. I explained to him that I'm usually interacting with just a few people at a time, which doesn't pose any real hearing issues. The only time I have problems with SSD is at a networking thing in a loud place, since I can't easily hear people on my left over the other noise. I told him that I use my eyes a lot to watch for people approaching me on my left so I can hopefully avoid ignoring them on accident. I also told him that I've only recently become more comfortable telling people up front that I can't hear them if they're on my left. I usually just try to nonchalantly switch with them, but if they then try to switch back, I will tell them that I can't hear them. Up until now, I've avoided telling someone I've just met because I tend to tell them the WHOLE story instead of just the part about not being able to hear them. But then what happens is that I end up continuing to interact with them, and then it's three months later and I still haven't told them and then I finally do, and they're like, why didn't you tell me before? So I've kind of made a pact with myself to be upfront that I can't hear them and then if I still know them later, I will tell them why.
I thought it was nice that Dr. C listened to that whole thing because I think it's important for doctors to know how the results of surgery or health issues continue to affect people's everyday lives even after the immediate issue is resolved. The same thing kind of goes for diabetes too. I have a chronic, non-curable disease that I live with everyday and have generally adapted to after having it for 21 years, but sometimes it frustrates me to no end, and unless you've experienced something like that too, you're not really going to understand how I feel. I appreciate my endocrinologist and think he does a great job, but he doesn't know what my life is actually like living with the disease. And Dr. C doesn't know what living with single-sided deafness is really like either, so unless I (and other patients) explain it to him, he won't know how to advise future patients who are nervous about possibly losing their hearing after acoustic neuroma surgery.
Anyway...
Dr. C said to come back in two years, and I'll have another hearing test at that point as well. If the MRI still looks unchanged then, we might extend the subsequent visit to more like three years.
So I've been tumor-free for three years, and there's no sign of anything similar happening on my other side, so things are good. Hope you're doing well too :)
