4 Weeks Later - How am I doing?

I'm talking again!

Had my Week Four follow-up with Dr. Li. I was hoping I'd be immediately cleared for wearing my rubber bands only at night, but he wanted me to go a few more days wearing them full time. That means a liquid diet until Saturday. Not un-doable, but still an exercise in delay of gratification.

On the plus side, I'm down to two (instead of six, followed by four) rubber bands, which means that I don't have to talk through clenched teeth. It is such a relief to be able to communicate verbally again. Friends don't have to be staring right at me to read what I'm trying to say and conversations don't have to pause while I frantically get my thoughts onto the whiteboard or angle a monitor in someone else's direction.

My jaw still isn't super flexible, so I'm a little stiff while talking (above and beyond the resistance caused by rubber bands) and I still have a nerve in my left jaw that gets tweaked when I make certain movements too quickly. That seems to be getting better each day, though, so I think it's just a matter of getting everything used to mobility again.

Other than the irritation caused to my lips by the surgical hooks on my braces, that's about the only pain I have now, and it's pretty infrequent. I'm off pain killers entirely.

I do think I forgot to mention canker sores and irritation to inner lips in previous entries. Basically, my teeth push more against my lips because the entire jaw has been moved forward. To add to that, before surgery, the orthodontist puts on these little hooks (not scary, sharp things, just little nubs to hook rubber bands onto), which are a little pokey. I think weeks 2-3 were when I had the most irritation - right when the stitches were dissolving, but not all of the healing was done. It's not so bad now, but having wax on hand is a must!

Numbness continues to improve - although I kind of feel like my left chin lost a little sensitivity when I started talking. Increased inflammation? My imagination? Who knows.

At any rate, starting Saturday I can "chew" again. That means I can add non-blended soft foods like eggs, well-cooked pasta, fish, etc. to my diet. My eating schedule for Saturday is already mapped out:

Breakfast: Red Hots at the Doyle Street Cafe (Red Hots are pancakes made with sour cream in the batter - they are incredibly soft and delicious)

Lunch: Macaroni and Cheese at Homeroom (I've never actually been here, but a friend recommended it for Mac and Cheese)

Dinner: Fish with mashed potatoes - Location TBD (Maybe a home-cooked meal?)

After that, THE SKY IS THE LIMIT! Ok, the limit is probably still pretty soft, but I am excited to able to use a spoon, for goodness' sake.

The thing I'm most excited about, though, is that I find that for the first time in a very long while, I am able to concentrate on what I'm doing and even multi-task when necessary. I really do want to write a post about why things like that are such a big deal for me, but I haven't quite worked up the courage yet to put it into words. Suffice it to say that I simply haven't felt like myself for many years now - I lost huge parts of my self-identity to sleep apnea (motivation, inspiration, curiosity) and now, even four weeks after surgery, I feel these pieces slowly resurfacing.

Part of the reason I've been loathe to put into words my experience with sleep apnea is that I'm wary of coming across as melodramatic. But sleep apnea has had a dramatic impact on my life, and the changes that I've seen and hope to see really are and will be life-altering.

Like I wrote on facebook yesterday:

For the first time in a very long while, I feel like I've made it to the end of the tunnel and, instead of discovering a sputtering florescent light illuminating the way to new series of catacombs, I'm standing out in the open air. I've got about 100,000 bad habits to unlearn... but it feels good to breathe.

3 Weeks Later - How am I doing?

Let me see...

Shall we temporarily ignore the fact that the hospital had an out of date number for my insurance ID code? It's only a $91,000+ charge. No sweat. Right?

Yes. Let's ignore that for now.

Aaaaaaaaaanyhow.

On Monday I had my weekly follow-up appointment with Dr. Li. Everything is looking good and he loosened my rubber bands once again. My nose and sinuses are healed to the point that I didn't require any clearing. The most exciting part, though, was that it signified the beginning of my one week countdown to being able to really talk.

Next Monday, my rubber bands come off and I only have to wear them at night. At this point, that is feeling like a pretty momentous occasion.

Confession: I did quite a bit of research about Maxillomandibular Advancement Surgery and spoke to a number of doctors before deciding that it was my best option. I read several blogs, flipped through some of the research, etc. That being said, I didn't really realize until my pre-op appointment that I wasn't supposed to speak for four weeks. I knew I'd be on a liquid diet for circa six weeks, and I knew that I'd have rubber bands to keep my jaw closed, but I figured that with the progressively loosening bands I'd be back to talking in no time. So, when I was told at my appointment about a week before surgery that, even though I'd be physically able to talk, I was advised not to for four weeks... I was a little surprised.

In retrospect, it was something I should have asked about. On the other hand, I was actually pretty okay with not knowing it way in advance. It was just another thing to dread that wouldn't have been worth stressing over.

In the end, not being able to talk hasn't been nearly as bad as I would have made it out to be, had I given myself the time to blow it out of proportion.

Still.

I miss being able to talk.

A lot.

So I am a little excited about being able to hold a real, adult conversation again without scribbling on a white board. If this had been a longer term/permanent issue, I certainly would have invested in a portable electronic device either for typing, text-to-speech, or scribbling notes. As it was, my mildly (ha) retro equipment served me fine. (Yes, yes, yes - it's appalling I don't have an iPad or smart phone. Blah blah blah.)

Pain levels have been good - very consistently tapering off. I'm taking Ibuprofen once or twice during the day and once before going to sleep. After week two's follow-up appointment I developed some pain in my left jaw/ear. I think it was caused by my new found ability to move my jaw laterally. Anytime I shifted my jaw slightly to one side, it causes a considerable amount of pain. For obvious reasons, I try not to do this.

For a few days I had a consistent ache in/around my left ear, but Ibuprofen, warm showers, and gentle massage of the surrounding muscles helped. I had one bad night where the pain kept startling me awake when I inadvertently moved my jaw, but for the last few days, both pain and sleep have been much better.

Sleep has been good for the last week, as far as I can remember, besides the one pain-interrupted night. One thing I've noticed over the last few days, though, is that I'm having trouble falling asleep. I'm feeling very jazzed up when I try to go to bed, even if I'm feeling quite tired. I'm trying not to nap, I'm trying to confine what little caffeine I'm consuming to the mornings, and tonight I'm going to throw in some relaxing music as well.

There is still some numbness in my chin and lower lip, but there is now some feeling in all areas, even if it's somewhat muted. Some parts seem to be recovering more quickly, but I'm feeling more confident that Dr. Li is right to think I'll recover all sensation. My upper gums continue to be just about completely numb, but I've been told that it will be the last area to return to normal.

As for eating, I've actually managed to maintain my weight pretty successfully. I intentionally put on a few pounds before the surgery and lost a bit of that weight, but have otherwise remained steadily in my normal weight range. I think the trick has been to keep a variety of food options around at all times and to make sure I'm snacking/eating throughout the day.

This week has been a little rough on the solid food jealousy front, though. For the first two weeks I was blithely content with my smoothies, soups, and milkshakes... but for the last few days I've felt like Pavlov's dog whenever the refrigerator door opens. I can't help but imagine what crunchy goodness my boyfriend might be obtaining.

Right now I am dreaming of a breakfast burrito. Is it too much to ask for? So soft and delicious!

My energy levels definitely feel like they are improving - though I had a little bit of a setback after overdoing it last week. I was relatively active last week and over the weekend I attended a wedding ceremony and had a house guest. Though I enjoyed my weekend immensely and neither the wedding nor the house guest were particularly demanding, there is most certainly something different between vegging out/relaxing on your own and maintaining attention on other people.

After a few nights and days of recuperating, though, my motivation, energy, and attention span all seem to be increasing noticeably. Instead of watching TV or movies, I find myself more interested in working on little projects or having a friend over for a bit.

A friend recommended I keep track of my moods to see how having a good night's sleep for once affects my outlook on life.

My mood today: Grumpy for about ten minutes this morning, then mostly optimistic, upbeat, and productive. Weird.

Dr. Li says this is just the beginning. I hope he's right with all my heart.

2 Weeks Later - How am I doing?

Not bad, is how!

I've managed to keep my weight up by perpetually eating fresh, tasty smoothies and soups. I've managed to keep my spirits up by spending time with friends and laughing as much as the stitches in my mouth allowed.

On Monday I had another follow-up appointment with Dr. Li and all seems to be going well. He loosened my rubber bands, so my jaw is slightly more mobile. However, it had the unexpected side-effect of upping my pain levels a smidge. Mostly I think it's because I've been a nighttime teeth grinder/clencher for many years now. I believe that with the increased freedom, my jaw is going a little crazier at night, making for some achier mornings. Ibuprofen still seems to be doing the trick, for the most part though, so other than a few painful tweaks of my jaw, it's been okay.

My sleep has been a little disrupted from the increased achiness, but my energy levels still seem to be increasing a little every day.

Dr. Li gave me the go ahead to talk a little, but before surgery I was told to give it the full four weeks before talking, so other than a few words here and there, I'm trying to stick to my relative vow of silence. Just two more weeks! Communicating via the written word and pantomime hasn't been as bad as I thought it would be. A friend of mine bought me a small whiteboard before surgery, so I pretty much just carry that with me everywhere I go. It's made me a little more selective about which thoughts I think are worth communicating, but it hasn't stopped me from having real conversations with my friends and family.

Also, if I want to be able to communicate with someone without them having to check my whiteboard every three seconds, I found a few hilarious online text-to-speech programs. A quick Googling will give you a slew of options. I've used this one a bunch: http://www.oddcast.com/home/demos/tts/tts_example.php. My favorite accent is Veena's.

For those who are farther away, I have Pidgin, where I can talk to my friends on gchat, MSN, and yahoo.

Skype has been a great way to keep in touch with my parents after they left last week. We've been video chatting - they talk and I type my responses back. It feels more like a real phone call than instant messaging does, so I really recommend it as a way to touch base with those you're used to calling on a regular basis.

I'll try to get up a Day 1 Post-Surgery retrospective tomorrow.

Vital Signs

So, I may or may not have dozed through quite a bit of yesterday (I guess two guests and my longest walk yet on Wednesday was overdoing it a bit), but I'm working on a post about the actual surgery and how I fared in the days afterward.

Since that's taking a little time, I thought I'd write a little bit about how I'm doing right now - It'll also give you an idea of some of what it's been like so far.

Pain

My sinus pain - which has been, by far, the most unpleasant and painful part of this surgery - has pretty much gone. In the mornings I feel some pressure, but a shower or some sinus irrigation (Oh yes, I will be talking about this) seems to do the trick.

The muscles under my chin are still sore if I stretch them and tender to the touch, but don't cause me any persistent pain, and the achiness  in my cheeks and around my jaw is pretty manageable with ibuprofen. I'm not even taking pain killers on a regular regimen anymore, which seems like pretty good progress to me!

Numbness

One of the weirdest parts of this surgery is the massive amounts of numbness that can follow it. One of the first things Dr. Li mentioned to me when I woke from surgery was that he'd had to dissect and move the nerves innervating my chin and lips, so that I could expect to feel very numb there for some time. He assured me that all the nerves were still intact, however, so I should begin to regain sensation over time.

My upper lip pretty much has full sensation, which is great, since all of my food intake is done via drinking! So far, the right side of my chin and lower lip have begun to regain quite a bit of sensation. Feeling started as these tiny, pinpoint bursts of tingling that the neuroscience in me couldn't help but imagine as a sad little action potential trying desperately to get a signal back to somatosensory cortex. Now I can feel pressure and temperature pretty well - just a little numbness remains.

Annoyingly, my left side has persisted at being insensible. Every once in awhile some synapse rallies its forces and I feel something there, but I'm pretty sure you could poke me with the sharp end of a pencil in my sleep and I wouldn't notice a thing.

Sleep

This, obviously, is the part I'm most interested in and trying the hardest to not be anxious about. Sleep deprivation has had an increasingly large impact on my life, particularly in the last 2-3 years and I've taken, I think you'll agree, a pretty drastic step to get a real night's sleep.

So far, It's really difficult for me to tell whether my sleep apnea is gone. I never snored and I never actually realized that I wasn't getting a good night's sleep until I took a sleep test at Stanford a year and a half ago. Because of pain and nasal congestion, I haven't been a very sound sleeper in the last few weeks, though that seems to be getting better every night. And, unsurprisingly after major surgery, I've been a little sleepy of late.

What I CAN say is that, when my nose is not congested, I can breathe much, much more easily than I could before. So, I'm feeling incredibly optimistic on that front. Also, the statistics are with me. About 95% of people who undergo this surgery are successful at reducing their apnea to satisfactory levels.

Spirits

My spirits throughout have been incredibly high. Everyone, from my doctors and nurses to my friends and family, has been incredibly supportive. I'm not nearly as comatose or bedridden as I'd feared, so I'm enjoying a little time to relax and recuperate and catch up with friends via instant messaging and whiteboard.

Later today or tomorrow I'll get up my first post about my surgery experience. Thanks for reading!

1 Week Later - How am I doing?

So, I've meant to join the ranks of the jaw bloggers (yes, there are a shocking number of play-by-play accounts of preparing for, enduring, and recovering from Maxillomandibular Advancement Surgery (MMA) aka Maxillomandibular Osteotomy, aka Bimaxillary Advancement, aka Orthognathic Surgery) because it was immensely helpful for me to read first-person patient accounts when deciding about the surgery and because I thought it would be a good way of updating friends and family about how I'm doing.

If you are asking, What in the hell is Maxillomandibular Advancement Surgery?, you can check out an informational page provided by my actual surgeon: Dr. Kasey Li

He even has a podcast interview about the procedure!

For now, i just wanted to give a quick update on how I'm doing, and then I'm planning on going back and writing a little bit more about what my experience has been like so far.

I had the surgery on Tuesday, August 30th - about a year and half after (finally) being diagnosed with severe Sleep Apnea. The surgery was conducted at Stanford University Hosptial by Dr. Kasey Li, who specializes in sleep surgery and is one of the (if not the) leading surgeons for MMA surgery in the country. I believe actual surgery time was about 4 hours, and everything went as planned.

I stayed in the ICU overnight and was moved to a regular room in the morning. After one more night in the hospital, I was discharged and, after a quick stop at Dr. Li's office, came home.

I'm doing really really really well - I tried not to think too much about the procedure ahead of time (those of you who clicked through to the surgery description will understand why), but vaguely entertained the suspicion that the experience would be incredibly awful, but then, eventually (months of recovery later), over.

Instead, the surgery was exhausting, disorienting, and not particularly fun... but all in all... not that bad. I've certainly been uncomfortable, unhappy at times, and in some pain, but not NEARLY as much as I worried. I'm gaining energy day by day and have even had a few friends come over to visit. I'm still pretty easy to tire, but Dr. Li wants me up and walking around when I feel like I can, so I've tried to do some good circuits around the neighborhood.

I'm off (liquid!) Vicodin and on (liquid!) ibuprofen, which is good - I feel a bit more like an actual human being.

Anyway, I'll post pictures of pre and post surgery (I do look a little different!) and add some more details about how everything went.

In the meantime, if you want to come visit me (I love the company!) shoot me an email or text. I can't talk on the phone (or at all) until early October - so don't bother with that. Please don't feel badly if I ask to delay by a day or two. I'm still really really tired a lot of the time, and feel under the weather some days more than others. And conversing via whiteboard is surprisingly tiring!

Also THANK YOU TO ALL MY FRIENDS AND FAMILY  - You all have been more lovely than I could have imagined. Your emotional, moral, and smoothie support have been both incredibly touching and unbelievably helpful.