Saturday, September 20, 2014

5-Year Post Surgery Update

Back in May, I went to Johns Hopkins for a five-year post-surgery follow-up with Dr. C and Dr. T. Dr. C said things were fine with my hearing and to come back whenever Dr. T wanted to see me again. Interestingly enough, though, Dr. T looked at my MRI and said that the area on the MRI that lights up a bit is unchanged over the five years since the surgery, so the assumption is that it is just scar tissue. Then he said that I am essentially cured, so I don't need to come back. I was surprised to hear that, and that freaks me out a little, so I think I will see about getting a check-up in another five years or so just to make sure (unless anything changes in the meantime, in which case I would go back sooner).

Friday, March 23, 2012

3-Year Post-Surgery Update

I got an MRI last week for my three-year follow-up appointment this week. Of course, I looked at the films afterward and didn't see anything tumor-like, but I'm not exceptionally skilled at reading MRIs, so I figured I'd just wait to see what the surgeons said.

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.


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 :)

Saturday, April 2, 2011


I've been remiss in updating the blog, but I think that's a testament to the fact that I am definitely in my "post-AN" phase of life and that I really don't think about it too much.

I visited Dr. C a couple of months ago for a two-year follow-up, and everything was fine. The MRI looked good, and any irregularities attributable to scar tissue had faded some since the one-year follow-up MRI.

My balance is normal, no headaches, and no facial weakness. Obviously, I still can't hear out of my left ear, but even that is just part of my "normal" now and I rarely give it much thought. I'm still not interested in a BAHA. Right now I'm looking forward to spring finally arriving in D.C. so that I can ride my bike to work again.

I hope that this blog is still helping to give newly diagnosed AN-ers a sense of what the journey is like and the knowledge that there can be a happy ending after finding out that there's a thing growing in your head.

Monday, February 15, 2010

One Year Ago

One year ago, I was in the hospital after having my tumor removed. I was off-balance, my shoulder hurt, and I was desperate to go home. Luckily, I've come a long way since then. I've completely recovered from my surgery, and the only lasting reminder is the silence on my left side. I go back to Johns Hopkins at the end of March for a follow-up with the surgeons and to go over my first post-surgical MRI. I'll be sure to post the results then. Thanks for following along, and best wishes to all of my fellow AN-ers!

Thursday, September 24, 2009

The results are in

I went up to Johns Hopkins on Wednesday for a hearing test and to meet with Dr. C. On the cab ride over, I had a strange feeling, like I was returning to the scene of the crime. First I had a hearing test, and the results were not surprising: I am completely deaf in my left ear, but I have perfect hearing in my right. Even though that's what I expected to find out, it was still a little sad to get that news. I had another strange feeling when the audiologist was testing the left ear and I literally could not hear anything. She would say, "OK, listen for the beeps," and I would sit there in anticipation until the test was over, having not pushed the button once.

Then I went to my appointment with Dr. C. One of his residents came in first to talk to me about things. We discussed the BAHA, and I agreed to do the demo, even though I'm not really interested in getting it at this time. During the demo, a headband with the processor mounted on one side is placed on your head, so the BAHA processor can pick up sounds and transfer them through bone conduction. It's not as good as having the real thing (the post screwed into your head), but the results are interesting, nonetheless. The resident and I walked and talked for a few paces, with him being on my left side. I could hear him pretty well, so it definitely works.

Dr. C came in later and we talked about the BAHA a little more. He said that some people get along fine without it, and for some people, it makes a world of difference. I told him that I've been getting along fine without it so far, that there's maybe one incident per week where I get frustrated that I can't hear on that side, but that I seem to have adapted pretty well overall. It hasn't stopped me from going to work, going out to dinner in restaurants, or attending happy hours where I don't know anyone. So for me, I think it makes sense to wait until I really feel like I need it, and maybe there will be even better technology at that point. No sense in getting a post permanently screwed into my head if I don't really need one. Plus, getting a BAHA would make me one step closer to being completely bionic (I already have the insulin pump), and that's no good!

Then he checked my balance by doing the thing where I look at the tip of his nose and he turns my head back and forth quickly to see how well my eyes stay focused. After many head whips (not really sure what to call them) to test the knowledge of the resident and scare the medical student who was in the room, Dr. C declared that my right side has completely compensated for the loss of the vestibular nerve on the left side, and I was dizzy. It went away pretty quickly though. He also asked me to raise my eyebrows, shut my eyes tight, smile wide, and whistle. I passed this test with flying colors.

The next thing I have to look forward to in my "adventures with manny" is an MRI next February or March. Then I will meet with Dr. T to go over the results of that test, and Dr. C would like to see me again as well.

I am very thankful that things have turned out so well. Except for a couple of days after discontinuing the steroid, I have had no facial weakness. My balance is excellent. I have been able to adjust to single-sided hearing. No headaches, no pain. And my tumor is gone. I wish that everyone could be so lucky.

Tuesday, September 8, 2009

Seven-month update

I had a scare over the past couple of weeks where I thought I had made negative progress. My neck was a little stiffer than it had been, and my scar area was more sore than usual. I think I irritated the muscles in my shoulder area by carrying some heavy groceries for too long. Now that it's two weeks later, it's feeling better again, and I have a reminder to not overdo it.

No new news on the crying/tears front. I haven't been able to test it again...guess I need to watch a sappy movie or something.

My hair loss has stopped; it lasted about a month. My endocrinologist said that it's common for that to happen after a stressful event. I think brain surgery counts.

I go to see Dr. C in two weeks for a hearing test and discussion about what I'd like to do in terms of getting a hearing aid or not. As frustrating as it is sometimes to not be able to hear, I definitely don't want to do anything at this point. I'm bionic enough as it is. And it's kind of funny when I think voices at the office are coming from one direction, only to find out that they're actually behind me. Yeah, funny. In a groan-inducing way. I dunno, maybe it's not that funny. But I don't want any more surgery any time soon.

Friday, July 17, 2009

Crying with two eyes

Great news! I think I have my tears back in my left eye. Something funny happened at work today that made me laugh so hard I cried. I grabbed a tissue to wipe my eyes and realized an hour or so later that I had been dabbing at both eyes! I think it's back!! I'll have to confirm with another crying session, but for now, I am going to say that it has returned for good. Yay!!