Adventures with Manny

Updates

2011-04-02T22:47:00.003-04:00

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

2010-02-15T21:32:00.003-05:00

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

2009-09-24T23:08:00.004-04:00

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

2009-09-08T16:59:00.003-04:00

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

2009-07-17T09:43:00.003-04:00

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

2009-07-15T10:24:00.003-04:00

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

2009-06-25T13:00:00.002-04:00

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

2009-05-29T16:55:00.001-04:00

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

2009-05-13T13:19:00.002-04:00

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

2009-05-03T21:10:00.002-04:00

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

2009-04-30T13:26:00.002-04:00

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

2009-04-20T11:07:00.003-04:00

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

2009-04-10T12:29:00.004-04:00

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

2009-04-07T23:00:00.008-04:00

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

2009-04-06T14:22:00.002-04:00

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

2009-04-03T15:21:00.003-04:00

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

2009-03-29T18:12:00.005-04:00

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?

2009-03-26T18:08:00.000-04:00

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

2009-03-25T10:17:00.011-04:00

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

2009-03-24T19:51:00.006-04:00

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

2009-03-22T21:53:00.002-04:00

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

2009-03-20T10:59:00.003-04:00

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

2009-03-16T20:45:00.004-04:00

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

2009-03-14T21:38:00.003-04:00

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

2009-03-12T10:42:00.004-04:00

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

2009-03-07T19:06:00.002-05:00

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

2009-03-06T13:31:00.003-05:00

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!

2009-03-06T13:17:00.004-05:00

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

2009-03-04T23:14:00.004-05:00

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

2009-03-02T22:25:00.003-05:00

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

2009-03-01T16:47:00.002-05:00

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!

Thanks, John and Molly

2009-02-27T14:02:00.003-05:00

The calla lilies are beautiful as well!

UPDATE: Funny story. I heard a noise (boom!), so I went into the living room to see the lilies on the floor with dirt all over, Sam covered in dirt, and Anna sniffing everything. I yelled at the cats and assumed that Anna knocked it over onto Sam, since he was all dirty and she wasn't. The next day, Sam was standing on his hind legs pawing at the lilies again, and I see what must have happened the day before: Sam knocked it over on himself!! I apologized to Anna for thinking she was the bad one, and I yelled at Sam again to get away from the plants!

Thanks, Al and Eileen

2009-02-27T14:00:00.001-05:00

The orchid is beautiful!

Thanks, Alice

2009-02-27T11:33:00.005-05:00

Today Alice went home. She was here for about two weeks helping out with household stuff and going places with me. It was fun to have her stay with us, and I think the cats are confused now because they were actually able to get used to her. Yesterday, she and I wandered around Georgetown for a couple of hours and picked up some cupcakes.

The back of my head

2009-02-25T10:18:00.003-05:00

You may be wondering what my incision looks like. Sometimes I do, and so I ask Phil to take pictures of the back of my head. I think it looks a little freaky, but when my friend Kim looks at it, she always says, "Wow, that's so amazing. It's so perfect." (You can click the photo to make it larger.)

2 weeks post-op

2009-02-23T14:49:00.004-05:00

Well, the big day was two weeks ago. I'm now off the steroid, which is making my shoulder hurt more (the inflammation is back). If this issue could just go away, I would be fine. I'm going to do more of the strengthening exercises that the PT recommended, as well as apply ice and heat to the shoulder. I may also look into acupuncture.

I put in my contacts today to see how that would go, and it seems ok. I don't think I'm ready to wear them all day, everyday, but it's nice to have total peripheral vision again.

Yesterday we went to get Phil a haircut and consulted with my stylist about how to even out my hair. She seemed to think that a simple trim to get it all closer to the same length would be fine. I'll probably wait a couple of weeks before having anything done (I'm a little nervous about people touching my head at this point).

Last night as part of the Academy Awards, we held the Cat Oscars. Sam was up for his role in "Other Cat's Food," and Anna was up for her role in "Cat on a Bookshelf." The Cat Academy (the three of us) voted, and Samuel L. Cat won Best Performance. He didn't give much of an acceptance speech though, and the two of them had a pretty lame after-party.

Today I'm planning to go to the Post Office to drop the Magic Scarf in the mail to the next lucky recipient.

Top 5 memories

2009-02-21T16:14:00.003-05:00

This is a list of the top 5 things that stand out in my mind from the hospital.

Not being able to breathe and being rushed through a bunch of weird hallways with an inflatable bag over my face
The feeding tube when it contained a disgusting green substance
The breathing tube being removed
Waking up and being concerned for my insulin pump but no one really explaining that it wasn't connected to me anymore and that I didn't need to worry about it getting destroyed in an MRI machine
Spit kept flying out of the anesthesiologist's mouth and landing on my face when he was telling me about his role in the surgery before the operation started.

Feeling good

2009-02-21T15:59:00.004-05:00

I've been feeling pretty normal for the past couple of days. Yesterday I took a shower by myself (using the shower chair), and Alice and I walked up to Cleveland Park (probably around a mile round-trip). Today we went to Whole Foods, and it was my first time back on the Metro. The trip itself went fine, but I was tired when we got home. I'm going to start using the Wii Fit again soon and maybe go to an actual yoga class next week. We'll see.

Chocolate is tasting better, but I haven't tried Diet Coke again yet. My mouth is feeling a little more normal, and my eye hasn't been too dry lately. I'm almost done with the steroid, so we'll see how things feel a couple of days after the last one of those.

I've been a lot hungrier the past day or two - I lost about six pounds in the hospital, and I can feel it. I'm sure they'll come back over time though. My clothes are kind of baggy.

My arm is improving. I've been using it more, and I think that's definitely helping. It feels stronger and more of my ring finger is coming back. My right leg is still sore though.

Phil and Alice have been doing a great job taking care of me, even when I get cranky at times. Thanks!!!

Thursday

2009-02-19T08:54:00.007-05:00

I don't have too much to report today so far, but we were able to wash what's left of my hair last night, so it feels a lot better now. Here is a pic from the hospital (I think this may have been last Thursday, but I'm not sure).

The leopard print scarf gets sent around as a good luck charm to people from the ANA Discussion Forum who are having surgery.

This or that?

2009-02-17T21:18:00.002-05:00

At Washington Wizards home games, they ask a player a bunch of questions where he picks one or the other. I thought it might be fun to do that here.

Hospital or home? Home
Chocolate or vanilla? Vanilla
Diet Mt Dew or Sprite Zero? Sprite Zero
Phone or email? Email
Thai or Italian? Italian
Big fancy burger or McDonald's cheeseburger? McDonald's

Back at home for 24 hours

2009-02-17T21:00:00.006-05:00

I got to go home last night, and it's so much better here. It's obvious how much sleep I wasn't getting at the hospital - my bed is way more comfortable. I finally got partly clean tonight, but my hair is still one big dreadlock. I can't wash it until at least tomorrow. It's insane how many bruises are all over my body. I've been awake for about 3 hours and then I take a 3 hour nap. It's working out pretty well.

Here's an overview of how I feel from head to toe:

Head - satisfactory. Stiff neck still, can't turn head too much but it doens't really hurt. My non-AN ear is having some eustachian tube issues (it won't pop/I can only hear myself breathe - kind of annoying when your hearing is gone from the other side) but Dr. C said to try some Afrin nasal spray for a couple of days and then come in if it won't stop. I could see it being related to allergies, but this has never happened before. It goes away if I lay down to sleep, only to reappear an hour or so after I wake up.
Shoulders - satisfactory. Seems to be loosening up.
Arms - very satisfactory. Bruises but most of the residual sticky stuff from tape and IVs has been removed.
Left hand - unsatisfactory. Still can't feel all fingers, still have weird skin pains. Did therapy putty exercises.
Torso - satisfactory. Heparin shot sites are a bit painful/bruised but not a problem.
Legs - unsure. The pressure points on my right leg are still weird, feels like a large bandage is taped over my leg. Can't fully feel touches on the right side of my right knee.
Diabetes - improved. Blood sugar actually registered in the 100s tonight before dinner. Sweet!! I'm down to 1 mg Decadron every 6 hours.

Major props to Phil for his showering assistance tonight. You did a great job :) Also special thanks to KG for driving us home last night, and to Alice for her help today.

Homecoming meal

2009-02-16T20:30:00.000-05:00

This is a picture of me soon after I got home. I had a celebratory meal of cottage cheese and blueberries with some Diet Mountain Dew. I was pretty tired and went to bed soon after.

(In the interest of full disclosure, this post was actually written on 2/27/09.)

Complaints welcome

2009-02-15T13:53:00.002-05:00

I thought that the diabetes wouldn't be so difficult to take care of. Apparently an endocrinologist wasn't consulted until last night when they asked me about calling my doctor. He said he was happy to help and offered some advice. I don't know why they didn't think to involve him or someone like him until now. Granted, my blood sugars are still out of range. But they just kept asking me what to do, and I have no experience with steroids - how am I supposed to know what will happen?? And, I just had surgery.

Additionally, I am barely eating, so I really don't think my diet is affecting my blood sugars, as someone noted in passing. Thanks for your opinion...(blank stare).

I'm closer to the low end of the mg range of the steroid, Decadron, now, so that's good. You can't stop it cold turkey though, so I have to finish the however many days of it there are. I'm burning through insulin like water and hardly making a dent. Very strange feeling, as I'm usually very sensitive to insulin.

Had I realized that this was going to be more of an issue, I may have tried to get more plans in place beforehand for the management of the diabetes, but it sounded like they knew what to do. Turns out all they did was ask a bunch of PAs what they thought and then left it up to me. If there was a treatment technique for AN removal/control that didn't involve steriods, I would totally do that, but I think it's pretty unavoidable. I hope I never have to go back on them again for the rest of my life.

Monday may be the day

2009-02-14T15:32:00.003-05:00

Dr. T came by a few minutes ago to say that I'm looking good but that my blood sugars need to be a bit closer to normal before I can go home. The steriod is being stepped down, but he doesn't know how low it needs to be before I'll be ok since (repeat after me...) everybody is different. It looked like he'd like me to be able go home though, so that's good.

Diet Coke and chocolate are two fallen soldiers in this whole thing so far. The metallic taste in my mouth makes them unappetizing, but I am getting hungrier. I told Phil that I want to eat three grilled cheese sandwiches and two brats, but not necessarily all at once. My neck is very stiff still. I did get the feeling back in the pinky finger of my left hand though, so that's a victory.

Not being able to sleep at night makes you more tired during the day, so at least one part goes faster. My eyelids still look like they're inside out - when I close them, I feel like I'm looking at bugs and weird stuff that's growing. Various bruises are healing too, including a goofy one under my left eye from the facial nerve monitoring during surgery. I'd like to get this last IV line out so it can start to heal, plus it's not being used for anything anyway. I haven't taken any pain meds stronger than OTC Tylenol, which was a bit surprising but not totally unexpected. The PT gave us some names for vestibular therapists closer to where we live - getting back to normal may definitely take some time. Walking in a straight line is ok, but I think I look zombie-like. Could also be from my bed-head. Need to find out more about showering.

Hello all

2009-02-13T12:59:00.002-05:00

Well, I'm posting this one today. It's a little tough with the numb fingers on my left hand, but I'm being patient for them to come back. They said it is probably a side effect from the parkbench position I was in for 10-12 hours where my arm was stretched out and the nerves disturbed. My face is doing well - hardly any evidence of weakness. Still gotta get the stuff out of my hair and my incision area feels pretty tight. Will take awhile for my neck to heal I imagine. Been walking with the PT and that's going well. I'm somewhat off balance but it's not horrible. I'm excited to drink some Diet Coke this afternoon. The hospital food isn't that great but enough is palatable. Those are the big events for now. Thanks for following along :)

Recovery Is Tough

2009-02-12T16:15:00.003-05:00

Kim is back in her chair today, and met with the physical therapist who had her up to take a few steps. She's eating food again and is back on her insulin pump. When a private room opens up, she'll be moved out of the NCCU, which should be a nice change of scenery for her.

Kim's trying to stay in good spirits but says: "It's hard to repair one thing when it seems like everything's broken."

-pz

Less Plastic, More Kim

2009-02-11T14:51:00.000-05:00

As of this morning Kim is sans the worst of the pesky plastic tubes (ventilator and feeding), and was able to get out of bed and move to a chair to hang out for awhile.

Dr. T and Dr. S (who assisted Dr. C with the surgery) came by to inspect Kim. Both were happy with what they found. There is more improvement in the shoulder, still no signs of anything odd with the facial nerve, and a healing incision.

Dr. T said that the head MRI looks great. Also, the neck MRI revealed the source of the shoulder issue (in short, swelling around the 5th and 6th vertebrates pinching a nerve, which will resolve itself with time).

Kim is going stay in critical care the rest of the day, and will hopefully be moving to her room tomorrow morning. We'll try to post tomorrow.

-pz

The Day After (Vol. 2)

2009-02-10T22:54:00.003-05:00

This afternoon Dr. C and his crew stopped by to visit Kim and I. He was pleased with how Kim looked and responded. They reaffirmed that Kim was breathing on her own power (she was pronounced "the Olympic champion of breathing"), and that the ventilator was now in place only to ensure that an airway is open. Dr. C was very pleased and happy (and I think a little surprised) with how Kim's facial muscles were responding (perfectly). He posed an alternate theory to what may be going on with Kim's left shoulder, saying that the eleventh nerve, which is in proximity to the area they worked in, may have be disturbed by swelling etc. In any case, he also noticed improvement and is expecting the issue to resolve.

Kim was (finally) taken for her MRIs at 6:30, and was not back when I left at 8:30. However, I just spoke with Kim's nurse who said that Kim's back and that the scans look good. The current plan is to remove the ventilator tomorrow morning.

Kim is doing well... responding and writing with no problems, and seemingly in ok spirits. Obviously the breathing/feeding tubes are not very comfortable, and I can tell Kim will be hugely excited to have them removed tomorrow morning.

More tomorrow evening.

-pz

The Day After (Vol. 1)

2009-02-10T14:34:00.003-05:00

Early this morning Kim was put on a ventilator as a precautionary measure because she was having some difficulty breathing probably due to swelling around her throat. They're going to run head and neck MRIs this afternoon to confirm that nothing is out of the ordinary. It's possible that both the breathing and shoulder issues stem from a pinched nerve, which the MRIs will also help to rule in/out.

Kim is awake and able to write. Dr. T spoke with both of us at length this morning about the outcome of the procedure. Overall, he sees the surgery as very successful. Kim is responding well, showing no effects of facial weakness (though this may change temporarily depending on swelling), and regaining strength in the left shoulder at a noticeable rate. He thinks it's most likely that the breathing issues are simply a result of swelling, and imagines they will be able to remove the ventilator shortly after the MRIs. The only long-term issue will be the loss of hearing in the left ear. The hearing nerve is in tact, but he said it was fairly damaged (it's "just a wisp"), so hopes are not high on that front.

Being able to talk to the doctor with Kim was definitely helpful as we could both see that he is optimistic and expects that (aside from these relatively small and odd issues) Kim will be progressing as expected. For now she's going to stay in the critical care unit until we have the MRI results and subsequent plan.

I'll post more after visiting hours tonight. Thanks to everyone for their thoughts and support.

-pz

The Big Day

2009-02-09T23:27:00.001-05:00

Hello all,

Kim asked me to update the blog today to let everyone know how her surgery went. So, here goes...

We arrived at Johns Hopkins in Baltimore ~5 this morning (a huge thanks to Chris for driving us from D.C.). Kim was in pre-op until ~7:30, and was (for good reason) extremely nervous. Both of the primary surgeons and the assisting surgeon stopped by to talk with her, and her anesthesiologist did gave an excellent overview of how he would be monitoring and managing Kim throughout the surgery. Because Kim was pretty nervous, he gave her something to help take the edge off, and then they moved her into surgery. We were told to expect everything to wrap up around 4 or 5pm.

From there...

* We were told that the first incision was made at 9:20.

* At 11 the nurse checked it and said that Dr. T was progressing smoothly and that Kim was doing well.

* At 12:20 we were told that Dr. C was now in the OR handling his portion of the surgery, and that so far everything had gone well.

* At 2:20 we heard that Dr. C was still working and Dr. T was scrubbing back in.

* At 4 Dr. C came out and let us know that he was finished with his portion of the work, and that Dr. T was continuing. The procedure would likely take two more hours as they work on removing the tumor and closing. They said that Kim had a fairly small space to work in (anatomically), and while the tumor wasn't any larger than expected this lack of room would cause it to take a bit longer than expected. Also, the tumor was stuck to the facial nerve more than hoped and there will likely be some temporary facial paralysis. However, she was doing fine otherwise.

* At 6:30 Dr. T came out to let us know that they had finished the procedure. Kim was now awake and on her way to the ICU where we would eventually be able to see her. While he could not be sure, his feeling was that hearing was likely lost in the ear (this lack of optimism was later expressed by Dr. C as well).

* While we were waiting in the ICU, Dr. C and Dr. T came out to let us know that the facial weaknesses seemed to be fairly minimal. However, there was some (unusual) weakness in Kim's shoulder, and they took her for a cat scan to make sure that nothing was out of the ordinary. The doctors felt the cat scan looked good, and are assuming that the shoulder weakness is a temporary side-effect of the position her arm had been in for the duration of the surgery (possibly furthered by diabetes). They said that it seemed to be improving and that they would watch it over the coming days.

* We were able to see Kim at 8. She was in a bit of pain and was worried about the shoulder, but was half-awake and able to whisper.

That's where things were left. Overall, both surgeons seemed to feel fairly pleased with how things went. While hearing was likely lost, and there may be some temporary facial weakness, these were both things that we expected. I'll continue updates tomorrow as Kim makes the switch from the ICU to her room.

-pz

Day before surgery

2009-02-08T15:35:00.003-05:00

My brother came to hang out for the weekend to distract me from the events on Monday. Unfortunately, he had to go back to school today, so now I'm back to worrying a little. We went to Whole Foods and picked up some snacks for the hospital, since I've heard that the food is somewhat lackluster and not very attractive when you don't have much of an appetite. I'm working on packing a bag for Phil to bring once I get to a regular room, and we're going to discuss the updates list later today.

It's so weird that this is actually happening. What seemed like so far away in December is here now. I guess we'll just see how it goes...

Last day at work for awhile

2009-02-06T15:31:00.001-05:00

Today was my last day at work for six weeks. My coworkers surprised me with a breakfast, which was nice. I told them that I'd be back before they know it! See ya soon, cubicle :)

Waiting

2009-02-04T11:27:00.003-05:00

I'm at work today - I have 2 1/2 days left until I'm out for six weeks. Seems pretty surreal. It's just so strange to go from regular-do-everything Kim to had-brain-surgery Kim. I really only get freaked out when I imagine waking up after surgery and having a bunch of tubes and IVs and stuff on me.

I had a dream about everything last night. I was staying on the 94th floor of a hotel the night before surgery. I had to be there at 5:30 am, but I woke up at 6 am. I rushed to the hospital and they took me in and put a gown on me. Then I was on a gurney being wheeled around the hospital but I wasn't going to surgery. The details are fuzzy now, but basically I was just going to different places and being left there with no explanation. Eventually, I found my family and they didn't know what was going on either. Then we were told that it was a fake hospital and they never intended to do any surgery, so the whole day was a waste of time. Not sure what that means...

Pre-op stuff

2009-01-26T15:31:00.000-05:00

At my pre-operative appointment today, I did the following:

Met with admissions and established that I am willing to pay $5 per day for a private room, if available
Gave a thorough medical history to a nurse practitioner by answering "no" a lot
Had an overall health exam by the NP and got dizzy from taking deep breaths repeatedly
Allowed the Chinese resident doctor to look in my ear even though she couldn't hold the otoscope correctly
Gave a urine specimen
Maintained consciousness while my blood was drawn
Had electrodes attached to me for an EKG test
Signed surgical consent forms

You know the drill: no food, drink, or medication after midnight the night before surgery. Well, I had never considered that the rule would apply to my insulin pump, so I was confused when he asked me what my plans were for the night before. I replied, "Uh, wear my pump until I get here?" Then he asked what would happen if I didn't use it, and I said, "You mean if I disconnected it from midnight to 5:30 am? My blood sugar would be really high because I wouldn't have had insulin for 5 hours." He looked concerned at that answer and said he would ask his boss. Needless to say, the NP got permission from the anesthesiologist for me to wear my insulin pump after midnight on the night before surgery.

(In the interest of full disclosure, this post was actually written on 2/3/09.)

A group of supporters

2009-01-24T15:23:00.002-05:00

Today was my second Acoustic Neuroma Association D.C.-area support group meeting. We didn't have a speaker this time and instead went around the circle to tell everyone about ourselves. There were probably between 5 and 10 people who also had Dr. T and went to Hopkins, and they all told me that I will be in good hands. It's nice to know that all of these other people have gone through a similar situation and that they've been able to deal with things well. They asked me to let them know how things go; our next meeting will be in May.

(In the interest of full disclosure, this post was actually written on 2/3/09.)

Long day in Baltimore

2008-12-17T15:05:00.001-05:00

Phil and I went up to Hopkins again today. Our first appointment was with Dr. T, the neurosurgeon. He had obviously done a lot of these surgeries as he had his whole conversation perfected. He briefly went through the treatment options and then discussed the retrosigmoid surgical procedure and its risks; Dr. T was able to give percentages specific to my case for my risk of hearing loss, facial paralysis, and headaches. Overall, Dr. T felt that I should make a pretty full recovery, and we felt good about Dr. T's knowledge and experience.

Afterward, I went to the audiology department to have an audiogram performed. I would get the results at my appointment later that day with Dr. C. Then I took part in a study that Dr. C was heading and went out to lunch with Phil and a friend from college. I was also able to speak with Dr. T's secretary to schedule the surgery for Feb. 9.

At the meeting with Dr. C, we went over some questions I had and the audiogram. It showed that I have a 30-40% loss of hearing in my left ear with 80% word recognition. This means that I can both hear reasonably well and understand speech very well. We all agreed that it would be in my best interest to try to save some of this hearing. Even if I end up with only a little hearing left, it will help with directionality and knowing where sound comes from. I signed the surgical consent forms, and then the appointment was done.

We went home feeling very good about things and looking forward to getting the surgery over with.

(In the interest of full disclosure, this post was actually written on 2/1/09.)

Is the glass half full or half empty?

2008-12-15T10:54:00.000-05:00

I got the radiologist's report for the MRI from last week.

"Again noted is an enhancing mass lesion in the left cerebellopontine angle. The majority of this lesion is in the cerebellopontine angle, but with a component protruding into the internal auditory canal. The extracanalicular portion of the mass has increased in all three dimensions when compared with the previous study measuring 1.4 AP x 1.3 RL x 1.6 cm SI (previously 1.3 AP x 0.9 RL x 1.3 cm SI)."

In layman's terms: I still have a tumor. It's grown since the last scan taken four months earlier.

As nice as it would have been for it to not have grown, I was also glad to see it grow because it confirmed that I should go ahead and have surgery now instead of waiting longer.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Brain MRI, Take 2

2008-12-10T22:46:00.001-05:00

I had my second brain MRI today. It was pretty much the same as the first one except I had a different tech. Also, during the scan, I was thinking about whether or not my tumor grew instead of wondering why I was wasting my time having it done.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Baltimore, here I come

2008-11-25T16:40:00.005-05:00

Phil and I went up to Johns Hopkins for the first time today. Dr. C, a neuro-otolaryngologist I found through a search on the discussion forum, was willing to see me on his off-day, only a few days after I initially called to make an appointment.

Our first impression was that even though the hospital isn't in the greatest part of town, the facility itself seems really good. The security at the entrances is reassuring, and the staff is very friendly and helpful. After we headed up to the appropriate floor, we found that the patient intake system is organized with a numbered ticket dispenser, which allows for patient confidentiality as well as creates confidence among the patients that they aren't being forgotten.

The appointment with Dr. C went well. We met first with a younger resident-type guy who took my history and cleaned a glob of wax out of my left ear. Then Dr. C came in and went over the treatment options (watch & wait, surgery, and radiation), focusing on the retrosigmoid surgical procedure. He said that, at Hopkins, they're excellent at retrosigmoid, good at translab, and they don't do middle fossa, and he talked to us about what to expect post-surgery in terms of headaches, loss of balance, and general recovery.

Dr. C also did a thorough examination of my current state of balance by asking me to do some marching in place with my arms extended and my eyes closed, and he checked my vestibular function by turning my head quickly and seeing if my eyes were able to stay focused on his nose. I was able to pass these tests, meaning that my balance nerve was still working and that I may have a harder time after surgery since my other vestibular nerve hasn't done a lot of compensating already.

At the end of the appointment, Dr. C said that I should make an appointment with Dr. T, the neurosurgeon, and schedule a new audiogram. He also gave me the surgical consent forms to look over and bring back next time I saw him if I wanted to have surgery there.

Overall, our impressions of Johns Hopkins and Dr. C were extremely positive, and we left there smiling and feeling very confident that these doctors would take good care of me.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Need more advice

2008-11-18T14:24:00.000-05:00

I had been thinking about Georgetown vs. House for a week when I decided to ask the folks on the forum for advice. They agreed with my inclination to get another opinion at Johns Hopkins and shared with me their stories of how they decided on treatment. It was very helpful to hear from everybody and gave me confidence to keep researching.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Hello again

2008-11-13T12:39:00.000-05:00

I met with Dr. J at Georgetown again. I explained to him what the House docs told me and said that I was thinking about doing translab instead of retrosigmoid. He seemed disappointed but said that if that was what I wanted, he could do it. Then I asked him a couple of questions about things I read related to what you can and cannot do after surgery. At the end of the appointment, he gave me the name of his surgical coordinator and told me to schedule as soon as possible since he was booking up pretty far in advance.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

I'm in the driver's seat

2008-11-06T12:03:00.002-05:00

Dr. S, the neurosurgeon from the House Clinic, called me at work today. Here are his thoughts:

Since I am 26, it must be treated; no watch and wait. He would be reluctant to do radiation on a young person, but it could be done. His recommendation would be surgery.
He felt that the shape of the tumor looks unfavorable for saving the hearing.
In terms of his recommended approach, he felt that the tumor was slightly too large to attempt middle fossa, as it would increase the risk to the facial nerve. He wouldn't do retrosigmoid either because it would be difficult to get it all out of the IAC. He thought that translab would be the best way to get it all, but that I might want to wait until we established that it was actually growing.
He thought that I should get an MRI every three months until we see growth compared to the first MRI.
His suggestions for reasonable "next steps" were: 1) wait for growth, then do translab, 2) do translab now, and 3) do retrosigmoid now.

I liked how Dr. S didn't just repeat verbatim what Dr. F had told me earlier and that he was able to offer additional things to think about. I liked that he offered options; I felt like I was more in control of what was happening to me instead of feeling like I was being steered into doing just what the doctors thought.

I was considering going out to the House Clinic in Los Angeles at this point, but I wanted to hear what Dr. J said locally before I made any commitments one way or the other.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Nice to meet you

2008-10-26T14:22:00.000-04:00

I finally posted for the first time today on the ANA discussion forum. I wanted to introduce myself and ask for advice about talking to doctors.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Still amazed at the follow-through

2008-10-11T11:21:00.000-04:00

Dr. F gave me another call today to let me know that he had consulted with Dr. S. He asked me which way I was leaning - translab, where I would definitely lose the hearing, or middle fossa, which would allow for a chance of saving the hearing. I said middle fossa, which seemed to surprise Dr. F, who then stressed the fact that I would most likely lose my hearing either way and that translab was their recommendation. He also reiterated that "radiation therapy is not for [me]."

He went on to more fully explain the BAHA (bone-anchored hearing aid) device, and how that it does a good job allowing people to "hear" on both sides. The BAHA consists of a titanium implant that is screwed into the bone behind the ear and a processor that snaps onto the part of the implant that sticks out of the skin. The processor picks up the sounds from that side of the head and transfers the vibrations to the skull where they are "heard" by the other ear. Dr. F said that 25% of the patients with single-sided deafness (SSD) at House get a BAHA and that 90% of those people are happy with the device.

Dr. F told me to expect a call from Dr. S and said that he would have his surgical coordinator give me a call as well to discuss scheduling surgery and insurance coverage. He also gave me his cell phone number and said to call him if I had any other questions.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Another interesting appointment

2008-10-10T12:00:00.003-04:00

I saw Dr. G, the radiation oncologist, today. He explained the three options to me again (watch & wait, surgery, radiation) and briefly described the CyberKnife fractionated treatment. Basically, the goal of CK is to split up the total amount of radiation into several sessions so that the tumor gets the combined strength of radiation but the surrounding tissues get a much smaller accumulated dose. The rate of hearing preservation with CyberKnife is higher than with Gamma Knife for this reason.

GK is usually a single session of radiation directed at the tumor, and to ensure the patient doesn't move, a metal head frame is screwed into the patient's skull. CK uses a fitted mask to maintain an approximate continuity between sessions, but the machine also has an on-board CT scanner that scans the location of the patient's head during the procedure so the robotic arm can adjust if a slight recalculation needs to be made.

I didn't really feel that I learned any more about the CK option than I already knew from reading the discussion forum posts. The main thing I took away from this meeting was what Dr. G said toward the end of the appointment, which was that his recommendation for me, based on my age and the lack of long-term studies on the effects of radiation, would be to have surgery. He said that he wouldn't NOT do radiation treatment if that's what I wanted, but that it wouldn't be his preferred choice.

The thing that AN patients run into a lot of the time is a lack of unbiased sources for information. Surgeons generally want to cut, and radio-oncologists want to zap. I was surprised to hear that Dr. G, being a radiation oncologist, thought I should have microsurgery. That was when I decided for good that I needed to be focusing on surgical options.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Exceptional customer service

2008-10-08T23:00:00.006-04:00

Dr. F, a neuro-otolaryngologist (ENT) from the House Ear Clinic, called me today. We had a pretty long conversation, around an hour or so. These are some notes from that discussion.

Surgery is the best option for a 26-year-old; he would definitely not watch-and-wait or have radiation.
My hearing nerve is crushed and unresponsive.
In his opinion, the tumor is slightly too big to preserve hearing.
The goals of surgery, in order of importance, are 1) save the life, 2) remove all of the tumor, 3) preserve the facial nerve, and 4) save the hearing.
The retrosigmoid approach is very complicated and would not be a good option for my situation because it would be difficult to remove all of the tumor in the internal auditory canal (IAC).
He would recommend either translab or the middle fossa approach but thinks translab would be best because the tumor is slightly too big for middle fossa, plus the hearing nerve probably isn't worth trying to save and there would be an increased risk to the facial nerve.

Dr. F said he would have Dr. S, a neurosurgeon, give me a call to discuss my case, and that he would give me another call in a couple days after he consulted with Dr. S as well.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

It vanished

2008-10-02T22:50:00.001-04:00

Somehow, my FedEx to the House Ear Clinic disappeared. I put it in the drop box and forgot about it. I realized that I hadn't heard from House, so I went to track the package, but there was no information available. I called FedEx, and they sent a driver to check the box for my envelope. It wasn't there. I stopped by the box later that day and checked for myself. No luck. So I prepared another CD and letter to send out the next day.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

That wasn't what I expected to hear

2008-09-29T16:00:00.004-04:00

I went to see Dr. K today. He was disappointed at the results of my ABR test and said that it was unresponsive, indicating that my hearing may not be able to be preserved. What I didn't understand was, if that was the case, why could I still hear fine out of that ear? He looked over my spinal MRI films and said that there were no incidences of additional tumors, so I probably don't have NF2. In order to completely rule it out though, I would need to have genetic testing done, but since I have no family history of it, he felt it would be unnecessary to do that.

After we went over those things, I asked about the CyberKnife, which seemed to catch him off-guard. He started looking very uncomfortable and suggested that I see the radiation oncologist to ask about that specifically. He gave me the name of the doctor, and then basically the appointment was done. I felt like I had done something wrong, but I was just trying to get all of the facts.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Seeking the best

2008-09-22T14:41:00.000-04:00

I decided to go ahead and send a CD of my MRI to the House Ear Clinic in Los Angeles. They offer a free consultation, so I didn't think it would hurt to get another opinion about what's going on in my head.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

I thought this condition was rare!

2008-09-20T14:20:00.001-04:00

I went to the D.C.-area ANA support group meeting today. Our speaker was a doctor from a hospital in Virginia who runs a CyberKnife machine. He told us about the history of radiosurgery, from the early days of single-session Gamma Knife to the current way of using fractionated therapy with the CyberKnife. There were around 25-30 people in attendance at the meeting, many of whom had surgery throughout the years. Some people had radiation as well. A few people were watch & waiters, and a few others were like me who planned to do something in the near future but were still deciding the what and who.

One of the main things I got out the meeting was that radiation seemed like a viable alternative to surgery, and that if I had radiation first, I might be able to "buy some time" before I needed to have riskier surgery. The surgeons I had spoken with so far didn't offer radiation as a choice to me nor offer a thorough explanation of why. The other thing I learned was that the House Ear Clinic in LA is really on top of things in the AN world and that it would be worth contacting them for more info.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Getting the run-around

2008-09-08T14:11:00.002-04:00

I had been trying to set up another appointment with Dr. K, but his receptionists kept telling me that he's on vacation. I left a message and then followed up later when they said he would be back in the office, but they told me that he's still not back. The problem was that he had no appointment openings until later in October, but I didn't want to wait that long to see him again. The staff had to check with him before they could set up a double-booking. Eventually I emailed Dr. J to see if he could help things along, which ended up working. I'll be seeing Dr. K again on Sept. 29, which is awhile from now, but I guess I have no choice. Meanwhile, I'll keep doing more research.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Thank you, Internet!

2008-09-02T14:05:00.001-04:00

I found out about the Acoustic Neuroma Association and requested an information packet from them. Looks like there is a D.C. support group meeting later this month. I also started reading the ANA discussion forums and am finding it very helpful to hear from people who have been through this. I'm learning a lot but I'm too nervous to actually post yet.

http://www.anausa.org/

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Hey...it's not brain surgery

2008-08-27T16:24:00.003-04:00

People are always comparing the difficulty of things to brain surgery. You ask someone how to do something and they reply with "it's not brain surgery." Well, today was my first encounter with an actual brain surgeon, and he didn't seem to think that his job was as hard as everyone makes it out to be.

Dr. J was young, somewhat surprisingly young. He seemed very competent though as he explained the retrosigmoid procedure to us. The surgeons drill a hole in the skull behind the ear, retract the brain, and excise the tumor. This procedure leaves a chance for hearing preservation, unlike the other main AN-removal technique known as translabyrinthine. In the translab procedure, the surgeons drill through the inner ear canal, destroying the hearing mechanisms, to get to the location of the tumor.

As Dr. J was talking and demonstrating the location on a skull, I took notice of his hands. They were kind of dry but also very steady. That seemed like a good sign to me. He also seemed very confident, but I never got a specific number of how many of these he had performed. Dr. K had said that they do essentially one per week, but I wasn't sure if that was just the two of them or if that figure included other skull base tumor doctors at the hospital.

Phil and I left that appointment feeling pretty good about the doctors we had met at Georgetown.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

Three hours in a machine!

2008-08-20T19:00:00.001-04:00

I found out that a full spinal MRI takes about three hours, and they do it in parts over two days so you don't go crazy. It wasn't that bad, but the brain MRI is quicker and more enjoyable. Also, you can't use your insulin pump when you're in the MRI screening room (metal objects...huge magnets...not a good combination), so being disconnected from insulin for over an hour didn't do great things to my blood sugar.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

ABR is easier than MRI

2008-08-11T10:00:00.000-04:00

The ABR test is a cinch. All you have to do is sit very still in a recliner while the techs put some electrodes on your forehead. You're not allowed to fall asleep, but other than that, it requires no real effort.

The audiologist said that "the test results were consistent with my diagnosis." I wasn't really sure what to make of that.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

The onslaught of info begins

2008-08-08T12:00:00.001-04:00

Phil and I arrive at Georgetown Hospital to meet the ENT, Dr. K, there. We wait in the waiting room for a long time and are then finally called back. Dr. K explains the options (watch & wait, radiation, surgery) and recommends surgery due to my young age. Most acoustic neuroma patients are in their 40s or 50s. He says that there is a chance that I could have Neurofibromatosis-2 (NF2), a genetic disorder that causes these benign tumors on both sides of the head and along the spine, because I am on the young side to present with just a single acoustic neuroma. He recommends that I get an MRI of my full spine to check for any incidence of tumors. He also wants me to get an auditory brainstem response (ABR) test, as that will help them determine the level to which my auditory nerve has been affected by the tumor. Finally, Dr. K gives me the name of the neurosurgeon with whom he works on AN cases, and I'm to set up a meeting with him to discuss the actual surgical procedure in greater detail.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

Reading between the lines

2008-08-08T09:00:00.006-04:00

Phil (my husband) and I went to pick up the films and letter at Dr. W's office first. I went up to the receptionist's window and said my name and that I was there to pick up my MRI. The receptionist handed me an oversized envelope and said "good luck" in a hushed voice. I could feel her and the other woman behind the counter look at me the whole time as I made my way to the door. It was quite an eerie feeling. I asked Phil, "There must really be something wrong with me - did you see how they looked at me? Like I was going to die or something!" Phil, in his usual calm and collected manner, replied, "No, they're just not used to dealing with things besides earaches and allergy shots."

We got down to the building lobby, and I opened the letter from Dr. W to the Georgetown doctor and read it. I'm a "pleasant 26-year-old" presenting with unilateral tinnitus and hearing loss...MRI shows what could be a 1.5 cm acoustic neuroma...etc.

My hands are shaking a bit as we hail a cab to take us to Georgetown Hospital.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

A surprise phone call at work

2008-08-06T17:00:00.001-04:00

The day after the MRI, Dr. W called me at work. He launched into an explanation about cranial nerves and how a wart-like thing can grow from them. As he was explaining all of this, I thought to myself, "I need to listen to this carefully. If he's telling me all this stuff, it must be what I have." Dr. W said that during his residency in Canada, he saw a lot of people treated for this condition with radiotherapy, but that here in the U.S., most people have surgery to remove it. He also said that I would need to see a different ENT who specializes in this "thing," and asked me if I would rather go to Georgetown or Johns Hopkins. I told him Georgetown since I live in D.C. He said that he would call the other doctor's office to work on getting me an appointment.

Meanwhile, I was trying to figure out exactly what was wrong with me. He never called it an "acoustic neuroma," and based on his explanation, I thought it would be something easy to remove by going in through the outer ear. Only after I Googled "wart on nerves in ear" did I find out what I was in for. I went outside to call my parents, and my mom answered. She was as startled as I was but told me to not freak out too much until I met with the other doctor.

Dr. W called me back a couple of hours later to tell me that he got me an appointment with the doctor at Georgetown Hospital for two days later. That was slightly alarming because it was so immediate. Was this thing really a lot worse than I understood? I was supposed to stop by his office before I went to Georgetown to pick up the MRI films and a letter from him to my new doctor.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

MRIs are a nice way to relax

2008-08-05T18:00:00.002-04:00

I went in for my MRI (with contrast) today. Wasn't quite sure what to expect, but everything was fine. It was rather relaxing listening to the clicks, hums, and other rhythmic sounds the machine makes.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

Don't you think an MRI is overkill?

2008-07-21T18:00:00.001-04:00

I got a letter from the ENT today, asking me to give him a call. I do, and he tells me that he's going to mail me a prescription for an MRI. He doesn't say anything about what he thinks may be wrong, only that the unilateral hearing loss means that an MRI is the next step in figuring out the problem.

I called my parents and ranted about how an MRI seems ridiculous. I mean, I just have some ringing, and I can't even tell that I have hearing loss. I doubt an MRI is going to do anything. I decide to wait a couple of weeks before making the appointment.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

Press the button when you hear the sound

2008-07-15T20:00:00.000-04:00

I went for my first-ever hearing test today. I guess I've probably had one or two while I was growing up, but this one seems like the real deal. I go into a soundproof booth, and then the testing guy puts microphone things in my ears and hands me a button. I press the button when I hear the beeps, which range in tone and volume. Then he says a word and asks me to repeat it. The test doesn't take very long, and he shows me the results: I have hearing loss in my left ear, but my right ear is fine. On my way home, I got somewhat upset, thinking, "Of course I can't hear EVERYTHING, the ringing is in the way! Which came first, the hearing loss or the ringing? Are they connected? I don't understand what's going on."

(In the interest of full disclosure, this post was actually written on 1/28/09.)

Something just isn't right

2008-07-09T18:00:00.002-04:00

I finally decided to go to the ENT. The ringing hasn't stopped, and so, for my peace of mind, I am going to get it checked out. Dr. W is young but seems to know what he's doing. He instructs me to go for a hearing test.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

Do you know an ENT?

2008-05-27T19:00:00.001-04:00

I went to my new endocrinologist today (diabetes doctor). At the end of the appointment, he asked if there was anything else I had questions about. I told him about the ringing in my ear, and he said it wouldn't hurt to get it checked out. He gave me the name of an ENT in the same building.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

What is that sound???

2008-03-01T18:37:00.001-05:00

I've been noticing that I have a ringing sound in my left ear lately. I am slightly concerned because I don't think I've been exposed to any loud noises that would cause this.

(In the interest of full disclosure, this post was actually written on 1/26/09.)