November Already?

Six months have passed since the surgery and what a journey!!!

The most significant question still remains to be resolved - did the surgery work? At this point, I don't know. Perhaps I'm in denial, or perhaps I need more time. While I still wake up tired, sleeping 5-6 hours a night, I do feel that I have more energy and can make it through most days without too much trouble. Yet, I still feel there is tremendous room for improvement.

During the past month, I've reintroduced both Bi-PAP and the "Silencer" oral appliance. While I could not tolerate the PAP treatment due to aerophagia, I was able to tolerate the oral appliance with minimum advancement . I worked closely with my surgeon to monitor progress. Perhaps there was some benefit, but the surgeon and I agreed that the improvement, (based solely on how I feel, not measured in the lab) was not enough to continue using either one. My surgeon has suggested focusing the next few months on the psychological recovery (relaxation, stress relief, etc.). He does not plan to do a repeat sleep study at this point since I'm not yet sleeping well enough where we will get significant data from the study. He expects a sleep study would tell us that I'm not sleeping better than before the MMA and therefore is not justified at this point in time.

I'm going to make a final attempt (at least for now) to improve my sleep by trying a device called the Aveo TSD. You can do a Google search to learn more about the product. It's basically a device used to prevent the tongue from collapsing on the airway. It looks like a big binky. We'll see how it goes...

As far as the physical recovery, here's the "latest"

1. Eating most foods, with the exception of very hard foods or foods that require significant chewing or grinding to eat
2. Upper gums still numb and limited sensation in upper teeth, but slowly improving
3. Lower lip and chin still numb. Hard to say if this has improved in the past month
4. Lower teeth and gums feel "normal"

Prior to the surgery, I had set a goal to complete a hundred mile bike ride in November. I felt having a training objective would force me to focus on the positive aspects of physical fitness and health. Along with my brothers and friend, we easily completed a 106 mile bike ride in October at 5 months post MMA.

In the above picture, we are riding in a paceline on the 106 mile ride. I'm wearing the red vest. We rode the first 23 miles in just over an hour at a pace of 19.7 m.p.h. Drafting on a bike can be quite a thrill. (Riding on a flat road helped keep the average speed high as well.) It turns out that the October century was my second 100 mile ride since the surgery. As I've posted earlier, I rode my first century 8 weeks post-MMA. Cycling is truly a great way to recover.

Could It Be?

In addition to the actual "sleep," I'm working on changing my expectations from sleep - silly things like is it reasonable to wake with the refreshed and wanting conquer the world feeling? While it would be nice to feel that way, perhaps it's just not realistic. If I ultimately get there, great, if not, it's OK too.

Last Friday, I returned to see the surgeon. He always has two questions: 1) how am I sleeping and 2) am I in pain. I reported my sleep had not improved and I was not in pain. While we knew my surgery was not a guaranteed success, we had hoped there would be some improvement. Most people at 5 months have realized some benefit. He suggested that I give CPAP a month trial, and if I wanted, I could also give the oral appliance another try. I left his office quite discouraged, knowing that both the CPAP and appliance failed pre-MMA.

That night, I dusted off the Silencer appliance, cleaned out its cob-webs and went to sleep. Over the past 5 nights, sleep seems better. I'm sleeping at least 7-7.5 hours and feel like I'm in a deeper sleep, not waking up at all. Not only have the nights been better but the days seem to be improving too! The post lunch circadian dip is lessening as well. While it's too soon to claim victory, I'm very encouraged! I'm going to continue with the appliance for a couple of days, and then give CPAP a try.

Not All the Same

Since I've had the MMA, I have become very aware of other people's facial structures, particularly the jaw & chin. I look to see if they have a very strong jaw line or a weak jaw and chin. I also look to see if their upper jaw is setback like mine had been, or more dominant like others. I then wonder, based on my non-existent medical training, if these people have had an MMA or OSA. After careful observation of the jaw, I move on to check out their noses. Are their noses flat, proportioned to their face, too big, too small, etc. If their noses are flat, I then apply my lack of medical training to assess whether or not they have had an MMA.


Yesterday I met with twenty+ people who had the MMA. While I thought that we would all have strong jaws that would appear unique, I fully expected everyone would have the MMA nose - slightly flattened at the base and wide. Much to my surprise, I couldn't tell a thing about all these people based on their appearance other than they seemed very nice. We spent an afternoon together, relating to one an other's experiences, sharing our own stories, and providing support to those who joined the gathering in advance of their own MMA.



My major takeaways from the gathering were:

1. Be patient, healing takes lots of time
2. Don't overlook the psychological healing that goes with the physical healing
3. Everyone was in agreement that they would do the MMA again. Almost everyone felt they had improved, a few of us felt they still had room for improvement (including me)
4. Many of us have had at least one other medical procedure/surgery in addition to the MMA

As far as my own recovery goes, I've been focused on the behavioral aspects of sleep. Over the years of "bad" sleep, I've developed a number of behaviors that need to be relearned. The most significant behavior I need to learn is it will be OK for my day to start after getting a few more hours of sleep. I can't be in such a rush to get things going. In fact, I'm more likely to have a great day if I allow myself to get sufficient rest.

Probably Shouldn't Write This

I'm sure by posting this update, I'm going to curse any progress I've made. While I can't offer that "Great, and I feel rested" post, I can say that the past few nights have been "better." Although I'm only sleeping 5-6 hours a night, I have felt better during the day. The headache's gone, I'm not as tired, and I'm gaining some weight :-(

As for the rest of the healing process, here's where things stand today:

1. Chin, lower lip, upper gums, and palette still numb, and improving
2. Occasional jaw popping when yawning
3. Eating many more foods, but nothing that requires serious chewing. Bread crusts still require a fair amount of effort, and usually are too hard form me.
4. Sensation returning to the teeth, but they still have that wooden feeling
5. Speech has pretty much returned to normal.
6. Jaw mobility pretty good laterally and about 30 mm vertically (I didn't measure what it was pre-MMA)
7. Strength - Slowly returning. I'm riding 2-4 times a week, and it's getting a bit easier. Prior to the surgery, I could do 7 pull-ups. Now, I'm down to 3. I'll need to start weight training.

Double Sleep

This experience was just too bizarre...

In a dream last night, I took a nap. I dreamt that I was traveling, and while on the bus I fell asleep. Not only did I fall asleep, but I overslept by two hours and missed my stop. It's enough of a challenge being tired when awake, but being tired while already sleeping is even worse!

So here I am sleeping, and in my sleep, I go to sleep. And, I got to wake up twice in the same sleep stage. First, I woke up from the nap in the dream, then, I woke up from the dream itself.

Could this double sleep be a way to to cut my sleep hours in half? Or, could it be a way to sleep the same amount and feel like I slept twice as much? Or like most dreams, mean nothing at all.

"The Usual"

I'm back to my regular lunch at the office deli - I named it "The Usual" - roasted turkey with avocado & pepperoncinis. The only unusual part about "the usual" is the bread. Wheat bread is much softer than the preferred ciabatta a roll. Some say the whole wheat bread may even be healthier.

In the past week, my diet has expanded quite a bit. I can eat most foods that don't require extensive chomping and chewing. The teeth feel stronger, and as sensation returns, I'm more comfortable trying new foods.

Last week, I checked in with the doctor as well. The good news is that he expects the surgery recovery to be 100% (pain free, numbness will go away, jaw mobility will return, etc.) The unknown remains the quality of my sleep.

Over the past week, I've read up on sleep hygiene. The basics are pretty simple:

1. Regular bedtime and wake-up time
2. Don't nap
3. Avoid alcohol
4. Avoid caffeine 4-6 hours before bed
5. Limit activities in bed to avoid reading and watching TV
6. Exercise at least 4-6 hours before bed
7. Don't worry, be happy

Most of the things on the list are pretty easy. However, the last one can be a bit tricky.

Last night, I slept for almost 7.5 hours. While I didn't feel "rested", I felt good enough to work out. I rode my bike about 45 miles at a moderate pace with some good hill intervals. When I returned from my morning workout, I felt fine. As the afternoon wore on, I became exhausted, and fell asleep for a few minutes while watching TV. The question I can't answer is was I exhausted from the workout, or from not sleep enough.

Hosehead, For a Night

Since I haven't been sleeping so well, I tried my BiPAP last night - just for fun. The results were not much different than before the MMA:

• 6 hours sleep with the help of little round blue friend
• Did not feel more (or less rested) than without the machine
• AHI of 2.5
• Major discomfort due to swallowing air, even on Auto mode with the pressure starting at 7/5
• 90% pressure was 10.5/7.5 (lower than in the past - a sign of a bigger airway)

Last week, NPR ran a segment on napping. They featured http://www.saramednick.com/ who advocates daily short naps. These short naps seem to go against what I thought were the best practices for good sleep hygiene. However, when I do take a short nap (usually 5-10 minutes - and almost never), they definitely help.

Not Getting Enough...

...sleep.

Each sleep attempt is a new adventure. While I have yet to post the "Rested" experience, I can post "Worse" and "Same." It seems like the biggest challenge is simply staying asleep long enough. When my head hits the pillow, I'm out for four to five hours, waking between 3:30 and 4:00 a.m. Rarely, I'm able to fall back asleep. When I do fall back asleep, it's very fragmented, with many awakenings. Prior to the MMA, I had the same sleep patterns. The problem still seems to be in my head. I've spent the past few weeks trying to go to bed relaxed, leaving my daily stress away from the bedroom.


Here's the latest recovery update:

1) Chin - significant numbness reduction. Lots of electrical sensations when touched
2) Teeth - more sensation on bottoms, but many teeth still lack any sensation other than pressure
3) Jaw popping - not as much. I've suspended the stretching exercises, and am trying to chew evenly on both sides
4) Gums - still pretty numb
5) Wake up with a "clenched" jaw - this one is quite strange

Eating & Popping

As my jaw recovers, I've shifted to a soft food diet. At first things seemed to be going pretty well. Now, however, I've developed a "popping" discomfort where my upper and lower jaws meet.

At this point, I've stopped taking all sleep and surgery related medications. As my body adjusts and tries to establish its natural sleep patterns, my sleep has been fragmented and interrupted. Within the next couple of weeks, I expect a normal sleep pattern to emerge and experience the benefits of a good night of sleep.

As far as the surgery healing goes, things continue to improve. My chin is still quite numb with the expected "tingles" indicating the nerves are regenerating. The chin pain is gone, but when I eat or drink anything that's not ambient temperature, my chin feels like there's some food or liquid dribbling (which turns out not to be the case). My teeth are a little sore and I have an unusual sensation where the upper brackets remain. My upper front teeth and the forward part of the roof of my mouth are still completely numb.

My speech has improved dramatically, but by the end of the day, it's quite hard to enunciate words properly. Perhaps the jaw mobility exercises will help.

More Exercise

I saw my doctor today for a quick check-in/up. He's said that it's time to start exercising my jaw muscles to improve jaw mobility. In no time at all, I should regain complete vertical range of motion. We did not discuss exercises to improve lateral movement. In addition, he said I can advance from mush/mashed foods to soft foods. While I'm not ready to give up the comfort of the Magic Bullet, its days are numbered.

PB&J

Sunday, I got a bit more adventurous with my eating. I had my first PB&J sandwich . It was so good, that I had 3 PB&J sandwiches - each one carefully cut in quarters. The crusts were more than I could handle. PB&J was one of the food highlights at the rest stops for the bike ride. The other good options were energy gels and Gatorade.

It was amazing to see all the people who battled and are battling cancer as well as those honoring and remembering those afflicted. It was beyond words as we all clawed our way up the nasty climb 70 miles into the ride.


Here's a picture of me with my new toothy grin. I'm smiling because there were many kind people on the course motivating all of the riders as well as many riders who created a nice draft to fight the head winds.







Also, thanks for all the very positive comments and support on the blog- it's very much appreciated.

Insane!!!

For all the folks following the Tour de France, what was Contador thinking on the final climb of Friday's stage??? Sure, he wants to win the race, but he can't do it without his team. Madness...

I woke up this morning with noticeably less chin numbness and pretty much pain free. It seems that the saying "three steps forward, and two steps back" really applies to MMA recovery. While the surgery healing seems to be on track, the sleep recovery has been at a standstill, and perhaps somewhat of a regression in the past few days. My sleep debt must be much bigger than originally anticipated. Using the mortgage analogy, I'm so early in the amortization schedule, that I have yet to pay down any principal and benefit from owning more sleep equity. Perhaps the recession has a bigger impact than originally anticipated, and my sleep debt is underwater, only to face foreclosure and sale to the lowest bidder.

Scrambled Eggs and Soft Ice Cream

Given all the yummy choices of airport food, the soft ice cream and scrambled eggs called to me - just not at the same airport or meal. I'm back on the road this week, and arrived at the airport really hungry. Knowing that I wouldn't be eating the peanuts on the flight, eggs seemed like the next best choice (it was mid afternoon). Upon arriving in Las Vegas to make my connection I was still hungry and knew I could manage the soft ice cream - chocolate.

A good nights sleep still eludes me - yet I'm hopeful. Similar to last week, the most significant energy changes have been related to exercise. I have more endurance, strength and quicker recovery than before the surgery. In trying to get ready for the LiveStrong ride this weekend, I've been riding about 100 miles a week for the past couple of weeks and so far so good.

Last night/this morning I woke at 4:30 a.m. and that was it for the night. There will be some good nights, and some nights that could be better. I just won't be able to predict them in advance. In general, I'm still sleeping about 7.5 hours a night.

My teeth seem to be the most noticeable in the recovery this week. I can feel both the upper and lower back teeth come together when I bite down. Sometimes the bite feels lopsided - like the right side meets before the left side. Other times, everything is normal. The less I think about what's going on, the more "normal" it feels. The front teeth are numb, and the gums are pretty sore. The good news is that the gums are regaining their sensation on both top and bottom.

The chin pain seems to be stronger at the end of the day. I thought that it was pretty much gone, but over the weekend, it increased. I'd like to believe that it's just the nerves waking up.

My speech still hasn't fully recovered. There are a few tricky sounds (mainly the "s"). By the end of the day, it's really hard to speak. I have not had too much jaw pain, just a challenge in speaking clearly. Given that the lower lip is still numb, I don't think that I have full muscle control to form all the words properly. I return to the doctor on Monday, and perhaps I'll start to do exercises that redevelop the facial muscles that atrophied.

8 Week Photos

It's hard to believe the surgery was 8 weeks ago. Notice I'm smiling. It's because those nasty arch bars are a distant memory.

Progress Comes in Unexpected Ways

Today showed signs of recovery and improvement. But not in the way I expected.

I woke up after about 7.5 hours of opiate free sleep, feeling pretty much like every other day - tired. Since I signed up to do a 100 mile Livestrong bike ride in two weeks, and my longest ride since having the MMA is 30 miles, I planned a 60 mile bike ride today. Not knowing what to expect or how far I would be able to ride without "bonking," I met one of my riding buddies and we set out on our adventure. I rode 62.5 miles and climbed about 3700 feet of elevation.

While the ride wasn't easy, it wasn't as tough as I expected. The three reasons I came up with to explain today's positive experience were:

1. Sleep is better than I realize - perhaps a sign that the MMA worked
2. My weight dropped almost 10%, significantly improving my ability to ride at the same level as before, but not requiring as much power output
3. I spent most of the ride drafting behind my friend so he worked harder than me

As far as the update on the MMA recovery, there have been several positive improvements. The chin pain is not gone, but no longer as strong. My chin "tingles" most of the time, so the nerves should be firing. However, one of my molars has become very sensitive when I bite. The surgeon says give it a few weeks for my bite to adjust. Worst case, my dentist will need to grind down the surface of tooth. (It's a crown). The gums are getting more feeling, but the teeth still have no sensation other than pressure.

On The Road

I've been on the road for work this week. Prior to leaving, I expected eating to be quite a challenge since I would be away from the Magic Bullet for the first time, and I would be eating with my colleagues from work. Both finding food to eat and eating with others turned out just fine. I've managed to find oatmeal, fish, and mashed potatoes and won't come home malnourished. In fact, I've even had ice cream with several meals to provide that extra comfort.

Eating continues to exhaust me. Taking small "bites" seems to take forever...

The recovery continues to progress. After seeing the surgeon this week, I won't need to return for another 3 weeks since the chin pain seems more manageable. The chin pain is not gone, but I'm much more comfortable. Jaw mobility is also improving as well. I can open my mouth much more than before. The numbness improvement is harder to measure. It feels like the roof of my mouth is improving, but there has been no change in the numbness on the gums or chin.


I took this picture at the airport. It's food I won't be eating for a long, long time...

(Since I didn't eat nuts before the MMA, I'm in no rush to start now)

Peanuts & Cracker Jacks - NOT

At the ball park, there's an overly abundant supply of peanuts, Cracker Jacks, hot dogs, and just about every other unfriendly food for us mush/mash diet folks. Fortunately, they had chili too.

The home team won in eleven innings with an unusual finish when the catcher let a wild pitch pass on the third strike and the third base runner scored.

The recovery improves, in particular the chin. The pain is now shifting to a very strong tingle pain. In addition my gum sensitivity improves as well.

I tried to use a "flosser" to floss, but the teeth felt too tight, and I didn't want to floss aggressively -it 's back to the water pick.

6 Weeks

It's been six weeks and a day since the surgery. Being back to work full time and speaking for a good part of the day exhausts me by the time I get home. Not a surprise. The doctor said that many of his patients find the same thing.

The chin pain has improved again. It's not bad in the morning and sometimes goes away. By the end of the day, it's worked its way up to being quite uncomfortable.

Other recovery stuff of note:

1. More feeling in a few back teeth
2. More feeling on the upper inside gums. The outer gums are still numb on the top
3. More feeling on the outer lower gums
4. Speaking is still a challenge. It's hard to enunciate words, and it sounds to me like I slur most of my speech. In addition, like many others, I've developed a slight drooling problem when speaking. As my jaw mobility improves, all these should clear up

Sleep:

I'm getting about 8.5 hours a night. Although I still wake up tired and usually without a headache, I think that I'm better off than before the surgery. Until the pain is gone and my sleep patterns are reestablished, I'm making no judgements on whether or not the surgery "worked." The way I look at it, it's worked either way.

Powerless

Or less power?

Sunday was a good day. I made it back on the bike - twice. The first ride was a regular route with a long sustained climb of 3.3 miles and 1300 feet of elevation gain. Riding about as hard as I could, I was about 10% slower than riding at a comfortable pace prior to the MMA. It's amazing how quickly my power and aerobic capacity dropped in only 6 weeks. My heart averaged 171 beats per minute for 33 minutes. At the top of the hill, with about a five minute rest, I felt like I recovered quickly, and was able to ride home at a good clip.

Later in the day, my wife and I enjoyed a date ride. The company was much better for the second ride!!!

I returned to the surgeon this morning - he's closely monitoring my chin pain and has me returning for weekly follow-up. We've increased the Neurontin dosage, and either time or the medication has improved the pain. It's still strong, but seems to "go away" more often during the day.

Better Than Yesterday

Today I feel better than yesterday. Perhaps it's syrup an chocolate chips in my pancakes spiking my blood sugar, but perhaps I'm sleeping a bit longer and starting to pay-off the sleep debt.

The chin pain continues to be strong, but slightly improved from yesterday as well.

We had a very busy day yesterday, and doing normal things and being so busy felt good. We attended a Bat Mitzvah (she was GREAT!), luncheon, and dinner party. Even with a nap between the luncheon and dinner, I was completely worn out by the end of the evening.

With a so much of the activity centered around food, I found that eating was actually harder than talking. Although I had very soft food (mashed potatoes, egg salad, tuna salad, babbaganoush , and humus), after about 10 minutes of eating, my jaw was exhausted and it was very hard to open it enough to eat. As time goes on, the jaw will get stronger and eating will get better.