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.

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 :)

Updates

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.

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!

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.

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.

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!!

Accepting loss

It's only recently started to sink in that this hearing loss will be with me forever. When I was first diagnosed, I didn't really cry or get upset, I just dealt with what needed to be done. It wasn't until five months into it or so that it really hit me. Likewise, since surgery, I've just been dealing with SSD, and it's been fine for the most part. But now, about five months later, I'm realizing that this issue isn't going to go away; in fact, it will be with me forever. Now, I know I could get a BAHA hearing device or something similar, but that's not going to change the fact that I will never hear "normally" again. I guess you could say that I'm going through a kind of grieving process right now. But optimism will prevail!

Hair loss

For the past month or so, I've been losing a lot of my hair. Not balding, per se, but my hairbrush gets filled up pretty quickly. I thought it might be because I stopped taking those prenatal vitamins, but I figured it would slow down after a couple of weeks if it was that. I'd say this has been going on since the beginning of May. I did some Googling and found that hair loss is common 3–4 months after a major surgery. That fits my timeframe. But it didn't say how long it will last :(

Still here

Just wanted to pop in and say hi - not much new stuff to report on the acoustic neuroma front right now. Things are feeling pretty good.

Thanks for the support

I went to my third ANA D.C.-area support group meeting this past Saturday. The date was exactly three months post-surgery, and the people at the meeting were quite amazed with my progress. It was nice to have come full circle, from being newly diagnosed at the first meeting to being a week away from surgery at the second meeting to being pretty much fully recovered at the third meeting. I am planning to continue to go to most meetings in the future, at least for awhile, because I think it's helpful for newly diagnosed people to hear from others who've been through treatment and have only relatively minor issues.

Another thing about SSD

You know when you're on the phone in a loud place and you plug your other ear with your finger so you can hear better? Now I don't have to do that since I'm not exactly getting extra sound in that ear anymore.

Pros to SSD

I realized last night that there's something good about being able to hear out of only one ear. When going to sleep, I like it to be quiet and dark. The quiet part has gotten easier - I lay on my good ear, which helps block out any low sounds across the apartment and lets me go to sleep quicker. So far, that's the only positive thing I have experienced by being SSD. Oh well.

10 weeks post-op

You've probably noticed that I'm not posting a whole lot lately. Things are pretty much back to normal for the most part, and regular life stuff has taken priority.

Here's a quick update regarding my remaining post-surgery issues:

• Left hand - still feels a bit strange but is less hypersensitive. Still waiting to see if it ever feels like my other hand again.
• Left eye - been wearing contact lenses again for a few weeks. Eye is ok but a tad dry at times. Still no tears when I cry.
• Right knee - overall, much less tight than before. Can do a full quad stretch again, but the muscles/joint get tight after I stand for a long period of time.
• Left ear - still no hearing. I don't think it's coming back.
• Hair - growing back.
• Scalp - seems to be getting a little less numb because it's somewhat painful at times.
  

Vestibular study results

The researcher from the study got in touch with me this week to go over the results. Basically, he confirmed what I already knew: that my eyes move with my head when it turns to the left, and although the right side is better, it also has some deficiencies. His recommendation is to see a vestibular therapist for a couple of sessions to get some eye exercises that will help retrain my eyes and brain.

I told him I've noticed that since I've been getting out and doing more activities (running, walking, step aerobics), my bouncy vision and overall stability has seemed to improve. He thought that was a good sign that it may be able to fix itself over time without the help of a vestibular therapist but that I may still benefit from a session or two.

I think I'm going to wait another month to see what happens and how much I can do on my own, and then decide about the vestibular therapy. Hopefully the weather will start being more consistently warm so I can get out and about more frequently. I ran outside a second time this past weekend, and the "drunkenness" of my eyeballs was much less severe than the first run a week earlier. I think that's a good sign :)

(He sent me a page with graphs that show my "canal plane responses," and I have no idea what they mean, but I thought they looked cool. Also, he said that I am welcome to participate in additional testing with the wired contact lenses, but that I am under no obligation to do so. I might do it again, we'll see.)

I can't hear you

It's hard to fully understand what it's like to be unilaterally/single-sided deaf (SSD) until it happens to you. Before surgery, I had 60-70% of my hearing, and it worked ok. I couldn't use the phone on that side very well, unless I wanted to ask the person on the other side to repeat themselves several times, but I was able to hear the tv and understand people talking in person.

These days, as I am returning to my normal activities, I have been watching out for different situations where being SSD could be a hindrance. So far, nothing horrible has happened due to my inability to hear out of my left ear; I haven't accidentally agreed to something I would usually never do, such as wear a puffy pirate shirt to an interview with Matt Lauer on the Today show. I do, however, have a few stories that exemplify what it's like to live with single-sided deafness.

The first one is that my husband is constantly ending up on the "wrong" side of me. I guess we've always naturally positioned ourselves when walking so that I am on the right and he's on the left; unfortunately, I can't hear him if we're like that, so we have to do the "SSD shuffle" frequently.

Also, when walking on a sidewalk, I've noticed that I always hear people coming up behind on my right side, even though they're on my left. It's not possible that they're trying to pass me on the right since I'm already to the right side of the sidewalk, so I have to remember to just stay where I am. Dogs, bicycles, and runners have all startled me by suddenly appearing where I didn't hear them.

Last week, when I went to a happy hour with my friend, the room was pretty crowded. She and I were sitting at the bar, where she was on my right side, and then a small group of people started standing right behind us. Before that, I had been able to hear her just fine, since her voice projects pretty well, but once the people behind us started talking loudly, my one ear had difficulty discerning which voice it was supposed to listen to. Normally, both ears would focus on the appropriate sound and block out the background noise. Instead, my brain and eyes had to seriously concentrate on what she was saying so that I could hear her instead of the other girl.

All in all, these situations have not been insurmountable, though my patience at times has worn thin. I have to remember that my hearing is not going to suddenly snap back to how it was and that these are going to be lifetime issues. I guess we'll just see how it goes.

Evening it out

I got a haircut yesterday for the first time since surgery (actually since November or December...I don't follow the six-week rule very well). We just decided to even it all out to the same length, and then once the shaved part grows back in, we'll cut it like usual with layers and some angling toward the face. It feels a lot better to have a proper haircut again.

My week

This week was pretty much a "back-to-normal" one. I walked between Dupont Circle and Woodley Park instead of taking the train; I went to the gym, a happy hour, and a Wizards game; and I attended a full week of work minus a couple of physical therapy appointments.

I'm now finished with physical therapy, but I am supposed to continue doing some exercises at home with therabands. My shoulder feels fine but my left arm is definitely weaker than my right; also, I'm still waiting for the feeling in my hand to return to normal. My knee is better than it was but still needs more stretching.

I have been wearing my contact lenses more this week but my eye gets irritated by the afternoon, so I have to switch back to glasses. The dryness is probably exacerbated by looking at the computer all day, I'd say.

I'm being more cognizant of opportunities to practice my vestibular training; for instance, while I was walking across a long straight bridge, I noticed a sign at the end of it and thought I could try keeping my eyes fixed on it while walking and turning my head. I think it was a good idea :)

Monday will be my eight-week post-op anniversary. It's hard to believe that two months ago I was at the beginning of this journey. I feel almost like nothing ever happened. Thanks for listening!

Drunken eyeballs

The weather today was unseasonably warm, so I thought it might be nice to try jogging outside. I haven't run in awhile, so I didn't make it very far. The fact that my vision was bouncing along with every step I took didn't help my stamina either. I hope that this will improve as I run more and do more activities in general. I would compare the feeling I get with the jumpy vision to that of being drunk – it's difficult to focus on things, and my footsteps aren't exactly controlled. So the next time you have too much to drink, you can think of me and my compromised vestibular system.

How does it taste?

You may remember me complaining about Diet Coke a few weeks ago. I thought I'd give you an overview of my taste experience.

Immediately after surgery, I had a metallic taste that stopped me from eating chocolate and Diet Coke. Then about 3 weeks after surgery, I was able to eat them again - chocolate was pretty normal and Diet Coke was ok but not as refreshing as it used to be. Now at 6 weeks after surgery, the metallic taste is back for some reason. It's not affecting what I can eat as much, but it's just lingering...sigh. But overall, I find it hard to finish a carbonated beverage now, be it Diet Coke, Sprite, or beer. Something about the bubbles isn't as tasty as it once was.

As some of the AN Discussion Forum people say, "Acoustic Neuroma - the gift that keeps on giving."

Wired eyeballs

You may have noticed that I didn't mention the study in my last post about my doctor visits. That's because it deserves a post all its own.

I was told that I would be participating in a study about eye movement and tracking, and that because I had lost my vestibular nerve on one side, it would be helpful to see how my eyes and brain had adapted so far. I would have to wear contact lenses with sensors around the outside of them that would monitor my eye movement while my head turned from side to side. I said, "OK, sounds doable."

When we walked into the lab with that crazy contraption, I thought, "What in the world did I sign up for???"

Well, I signed up to particpate in a study called "VOR adaptation and the use of saccades as rehabilitation strategies;" a quick Google search reveals that VOR stands for vestibulocular reflex and that saccades are fast movements of the eye.

The consent form explains that "this research is being done to better understand how the vestibular part of the inner ear plays a part in vision and balance. The vestibular part of the inner ear senses your head tilt and rotation during movements like walking or driving. It sends information to the reflexes that help keep your eyes looking straight ahead while you are moving. When the system fails, abnormal reflexes can cause dizziness and blurred vision."

Yep, that's what's been happening to me since the surgery - quick movements of my head make me a little unsteady and cause my vision to bounce around a bit. Sounds like it's going to be hard to do well on these tests...

After everything was thoroughly explained to me by the lead researcher and I signed the consent forms, we got started. I sat in the chair, which Phil and I later found out was built in 1960 and is one of about ten in the world, and proceeded to have contact lenses positioned on my eyeballs. They weren't for vision though - the center was open, and a very fine wire around the perimeter of the lens connected to a recording system that measured magnetic fields in the room.

Additionally, I was fitted with a bite block made of dental putty so that my head movement could be measured with another sensor inside the block. If you refer to the photo above, you will see a large metal frame surrounding the chair. This is where the magnetic field originates from, and the most concentrated point of magnetic activity is focused around the head area (it was a very weak magnetic field and did not require me to remove my insulin pump).

We began the Dynamic Visual Acuity testing. This consisted of me sitting in the chair with the lenses and bite block in place, looking at a computer screen several feet in front of me. First we did the test while my head was stationary; what I needed to do was identify the way a letter E was facing (up, down, left, right) at a variety of sizes from large (~2 inches) to small (~1/2 inch). This was not difficult when I wasn't moving.

The lead researcher stood behind me, placed another sensor band around my head, and then started the motion part of the test. He quickly moved my head with his hands, which activated the letter E to appear on the screen. My job was to again identify the way it was facing - the problem was that unless the E was at its largest size, it just looked like a blur to me. This is because the vestibular function of my left ear has been disabled, and my brain has not been fully trained to compensate yet. What happens is that when I look at a fixed object and my head turns rapidly, my eyes move along with my head for a split second until they re-fixate on the object. This is not how it is supposed to work; the eyes would remain fixated on the object no matter how fast the head is moving.

From what I could tell, I was better able to identify the position of the E when my head was turned to the right, which makes sense since my right-side vestibular function is intact. We repeated this test several times on each side to account for each direction that corresponds to a different semicircular canal in the eardrum. There was straight left-to-right, straight up-and-down, diagonal left-to-right, and the others for the right side as well. I asked Phil afterward if it was obvious which way the E was facing when I wasn't able to tell, and he said yes.

After the lead researcher reviews the results, he is going to send them to me so I can see where my deficiencies are. I have a feeling that I'm definitely going to want to see a vestibular therapist...I doubt ping pong is going to be a miracle cure.

And, yes, it was awkward wearing the wired lenses. The right one got out of position halfway through and he took it out, so my left eye was doing all the work. Fortunately, I did not get a corneal abrasion from the testing, which was one of the risks, nor did I suffer a neck injury from all of the twisting. The photo at the left was taken while my eyes were being checked for scratches with fluorescent drops and a black light. If you look closely, you can see my eyes fluorescing...interesting, huh?

All in all, I think this was a worthwhile thing to do, and although they say in the consent form that there is no direct benefit to the participant, I think there just may be for me.