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.

Q & A with surgeons

I had my six-week follow-up visits with my surgeons today. They were pretty quick, but I got my questions answered. I met first with Dr. C., the neuro-otolaryngologist (ENT).

Me: Is there any chance of my hearing coming back?
Dr. C: It's not likely, but we'll check your hearing at your next appointment once you've healed more fully. Then we can also talk about how you're doing and if you want to explore a bone-anchored hearing aid (BAHA).

(Note: This preempted my next question about another hearing test and the BAHA.)

Me: Do you guys do TransEar here, or just BAHA?
Dr. C: We don't really do TransEar. I'm learning more about it, but I doubt that it would work well enough to make it worth it. And I would be uneasy about recommending it for a person with diabetes - if you had an ear infection, it could transfer to the bone much quicker and be more of a problem for you.

(Note: The BAHA hearing device consists of a titanium rod that is surgically implanted into the bone behind the deaf ear. An external processor picks up the sound and the vibrations are transferred through the bone from the deaf side to the hearing side. The TransEar works similarly to this, except that the entire device is external; no additional surgery is required. A hearing aid, inserted far into the ear canal on the deaf side, picks up the sound and directs it toward the bone so the vibrations can be conducted to the hearing side.)

Me: I am still experiencing some eye jumpiness when I am moving quickly or turning my head quickly. Is there something I can do to help fix this, or is it more of a "give it time" thing?
Dr. C: Since you're now missing the vestibular function on one side, your brain has to be retrained to take over for it. There are a couple of things you can do. One would be to go to a vestibular therapist who can help you practice these movements in a controlled way that will help your brain learn how to respond. What happens to a lot of people is that they get into a rut and stop pushing themselves, so their brain doesn't get a chance to practice. If you perform activities that involve hand-eye coordination where you're also moving your head, it will help exercise your brain. So you could try ping pong, badminton, and tennis to gain back some of the vestibular function.

Then I ran down to the fifth floor to meet with Dr. T., the neurosurgeon.

Me: What exactly is in my head? Can you explain how it was put back together?
Dr. T: We drilled out the bone behind your ear to remove the tumor. Then we patched the hole in your skull with a titanium mesh plate. Above that is the muscle layer, and then your skin, so you shouldn't be able to feel anything strange under there. Let me take a look at your incision. [Dr. T looked at my incision.] It appears to be healing well.

(Note: This preempted my next question about how my incision looks.)

Me: What is the process for my hand returning to normal? I've noticed that it's not really numb anymore, and that it feels extra-sensitive. Is this a good sign?
Dr. T: Yes, generally when this happens, it goes from numb to hypersensitivity and then eventually back to normal. It is good that it is progressing.

Dr. T. said that he'll see me again in one year and that I'll get another MRI scan at that point. Dr. C. said he'd see me when I come to see Dr. T. again, but I don't think he expected that it would be in a year. I'm going to ask him if it would be good to come sooner than that; I'd like to get the hearing test in more like six months or so.

I guess the takeaway from my appointments is that I'm doing well and that my lingering issues are just that - lingering - and they'll need some more time to resolve themselves. I can help my brain learn to take over more of the vestibular function by becoming more active and purposely pushing myself to do more things, and I could enlist the help of a vestibular therapist as well. I'll see how I do with my single-sided deafness over the next few months before I decide if I want to explore a hearing device (my guess is that I'll be ok without one).

Plans for this week

I'm going back to work tomorrow full-time, but I won't be in the office all week, so I guess it's a bit of a misnomer. On Monday and Thursday afternoons I have physical therapy, and on Tuesday morning, I'm heading up to Baltimore for my six-week follow-up visits with my surgeons. I'm also participating in a research study when I'm up there that focuses on eye movement/tracking after a surgery like mine. I'll let you know how it goes.

No hard feelings

I don't have much new news to share. I did go to work for four hours each day this week. In addition, I had physical therapy on Monday and Wednesday morning and a visit to my allergist on Thursday. I have been a little tired when I get home from work, so I've been taking a rest on the couch for an hour or so each night - not necessarily sleeping, but definitely taking a break.

I'm trying to be diligent about doing my quad stretches for my right knee so I don't have to see an orthopedist or have knee surgery to relieve the tightness caused by scar tissue around my knee. My left shoulder is doing well though and has noticeably increased strength. My hand is still weird, but I'm being patient about that.

I forgot how much I dislike sitting in my chair at work. I don't know why it's so uncomfortable, but it is. Not sure how I'm going to make it through an entire 40-hour week...ugh.

Here's a story:

I hadn't seen my allergist since before the whole acoustic neuroma thing started. When he came into the exam room, he said, "I haven't seen you in awhile." And I said, "Yep. Do you remember the last appointment when you said you thought I had polyps again, and I said that I was going to an ENT the next day to find out about this ringing in my ear?" He nodded. I said, "Well, it turns out I had an acoustic neuroma, and I had brain surgery five-and-a-half weeks ago."

My allergist looked a little stunned and repeated twice, "YOU had an acoustic neuroma?" Then he flipped through my chart and said quietly, "I don't know how I missed that. Did you have hearing loss?" I said, "Just a little." He was upset that he didn't catch the tumor, but really, there was no way for him to know about it. I had never mentioned the ringing or hearing loss (I didn't even know I had hearing loss until the first hearing test) to him, so I don't see how he thought he could have known about it. I guess it's just that it's in his general area of anatomical expertise, so he felt partially responsible for watching out for stuff like that. Oh well, there are no hard feelings on this end.

I had surgery five weeks ago

Today I went back to work part-time. Things are pretty much the same as they were when I left. Everyone was glad to see me, and they were impressed with how well I'm doing. I feel pretty close to how I did before surgery, and the remaining issues have integrated themselves into my daily life. At some point, the shoulder and knee problems, as well as the dry eye and short hair, will all be a thing of the past.

Here is a shout-out to the anonymous people at my work who donated their leave time to me. Thanks for your generosity!

Some things

Here are some brief updates, in no particular order:

• Physical therapy on Friday was good. I had requested an Rx from my doctor for my knee, so the physical therapist evaluated it and thinks we can just do some stretching to get the quad and hip flexor loosened up.
  
• I went to yoga class on Friday after PT. Most of the class was devoted to working on our Downward-Facing Dog position. For some reason, my knuckles keep popping up, which is not proper technique.
  
• I'm going to start back at work on Monday part-time in the afternoons. I figure that it'll be better to ease back in rather than do a cannonball into the deep end, so to speak.
• My balance is getting better overall. I don't feel like I'm going to fall over when I turn my head side-to-side with my eyes closed, and the spiral steps at the office are easier as well. I still have problems with standing on one foot, as witnessed in the dressing room at Ann Taylor tonight (Phil forgot about my balance issues and thought I was just being funny, or "ungraceful," as he called it). And I'm doing better at looking to the side (window-shopping) while walking - a necessary skill in order to fit in with "regular" people.
  
• My sleeping problems have decreased the past two nights when I took melatonin before bed, as advised by my doctor. Today I had a hard time waking up though, and I felt pretty unmotivated all day, but I'm not sure if that was related to the sleep issues or having done too much yesterday/previous days. I'm hoping that when I go back to work full-time, having a regular schedule will improve my sleeping habits.
• I realized that if I part my hair on the right, some of the extra hair on that side goes to the left and helps fill in what's missing. I'm not quite ready to get a haircut yet (don't want people touching my head), so this new plan seems good. Also, I can do a low ponytail now, and I don't think anyone can tell that something is different under there. I switched from a general women's multivitamin to pre-natal vitamins last week to get the hair-growth benefits (not for a baby!!).
• I need to go switch the laundry, so I think I'm done for now.
  

I'm back

My trip to Florida was great - I had plenty of sun and relaxation, and no problems with flying. I was more concerned about hitting a flock of birds than I was worried about my head exploding or something.

Sunday - my flight arrived at 2:30 in Orlando; we went to Disney Marketplace and ate lunch, and then we went on some buses to go to the Contemporary Hotel to take a water shuttle to the Wilderness Hotel; we took a bus back to our car and then drove home and ate dinner

Monday - I drove the golf cart to Starbucks then we went to the neighborhood swimming pool; we rode bikes around the block (ask me about how I fell off the bike) then went to the shuffleboard court; we got desserts ready for the open house where friends of in-laws stopped by to meet me; we went to Steak n' Shake for dinner

Tuesday - we went to see Grandma's quilting club then to another swimming pool with a waterfall; I took a quick nap before yoga class; we got Starbucks on the way home; we got ready for dinner at Carraba's; after dinner, a neighbor who had surgery for an acoustic neuroma in 1990 came by to talk

Wednesday - we went to Wellness Center for a massage then stopped by Grandma's house to say goodbye; my flight departed Orlando at 3:55

I'm going to try to include massage therapy in my rehabilitation regimen. I could turn my head way farther after the massage yesterday, and my shoulders felt much better. The massage therapist said that PT and massage will definitely speed my recovery time, and she offered some tips about heat and ice also.

Stereo sound

When I was in the hospital, I wanted to listen to some music with my headphones. At that point, I fully realized that I am deaf in my left ear. Fortunately, the most interesting part of the music comes through the right ear part of a normal pair of headphones, so I went ahead and listened with what I had.

Earlier this week, I realized that I needed to solve this problem, so I looked online and found a company that makes a single earbud that receives stereo sound. Many other single earbuds you will find produce mono sound, and in order to use them, you would have to convert all of your music from stereo to mono. That wasn't quite what I was looking for. Luckily, I came across Scan Sound and their 1-Bud product.

The only thing is that I have a first-generation iPhone that requires an additional adapter in order to connect non-iPhone headphones. Oh well, now I can listen to the whole song with just one ear! Yay :)

Door of cards

I've hung all of the cards I've received on the back of our door. We did the same thing at Christmas, and the door is definitely fuller this time around. Here are some stats:

Total number of cards: 23
Number of cards with cats on them: 3
Number of cards from my Grandma: 3
Number of times the phrase "Get Well" appears: 7

Thanks for your thoughts!

Happy Friday!

This morning I went to my physical therapy appointment. It was tough! First I was on the arm bike for ten minutes, then I did some stretching, then I did bicep curls – three sets of 20 reps with 4 lb weights. After that were several different exercises with stretchy bands. The last one was the hardest; I had a band looped around my wrists, and I had to pull the band with both arms so it was stretched as I walked my hands up and down the wall (3 sets of 10). I was sweaty at the end of that one. Luckily, that was the end of my hour of therapy. The therapist said that I might be sore for two days afterward, but if the pain continues into three days, that means we were too aggressive and we'll back off next time. I go back next Friday.

Feeling pretty normal

I would say that this week I've been feeling pretty normal. I've been doing "a lot" each day this week and haven't suffered any real ill effects - just a short (!) nap here and there. I'm finding that it's easier to sleep through the night if I minimize the naps during the day. Anna joined me for a siesta today.

I've been doing the neck stretches assigned to me as homework by the physical therapist. I think they're helping, and I'm applying the same principles to my knee (warm up the muscles and then gently stretch).

Good news! My neurosurgeon gave me approval to fly to Florida next week at four weeks post-op. I thought it would be nice to spend a little time with my in-laws, and I figured that some sun/heat couldn't hurt either. I'll be there from Sunday to Wednesday.

Physical therapy

Today I went to my first appointment with the physical therapist. I'm pretty excited about it - I'll be going twice per week, and we're going to work on loosening up my neck and strengthening my shoulder and hand. The therapist remarked, "That's quite a stiff neck!" upon witnessing how far (not very) I can turn my head. I replied, "It was a lot worse before!" She gave me some homework to do this week (10 reps of turning my head 3 times per day), and I have another appointment on Friday morning.

Pain in my head

I haven't felt like doing much today. I got up at 10 and then needed a nap around 1. It was hard to sleep last night because I couldn't get comfortable. My head has been hurting today, mostly on and around my incision. From reading posts on the ANA Discussion Forum, I think the pain is due to nerves waking up and saying "hey, I'm here and you did stuff to me, blaahhhhhhhh." The back of my head is still numb though.

Maybe I've been doing too much the past few days as well. On Friday night, Phil and I walked to a friend's place to take care of his cat. It was about 2 miles round-trip. On Saturday morning, we went to the office, and then I took a nap in the afternoon when we got home. We went to the grocery store on Saturday night and then did laundry. Today I'm just tired and have head pain, though I'm feeling unproductive so I just did the dishes.

Tomorrow and Tuesday are going to be busy days, so I guess it's not so bad to take it easy today. I need to go to Petco to use a coupon before it expires, and I have my first session of physical therapy for my shoulder tomorrow. Fun stuff!