Survived the Holidays, and that One Big Detail (12.31.15)

Today is four weeks and one day since my surgery, and I can safely say we survived the holidays thanks in large part to Amy's planning that reduced the amount of activity in any given day by spreading it out.  In the end, we didn't get to do everything we wanted to do, but given how a shower wiped me out for several hours just the day before it all began, we were able to do a lot more than we had planned.  I was also very good at effectively timing my exercises and 30-minute talking windows to get the most out of them.

We returned to Santa Barbara three days ago and saw Dr. Gunson for the four-week post op appointment two days ago. Things are continuing to go well.  I told them how I'm beginning to feel my upper jaw more and that, starting a few days ago, I could tell it would collapse or expand slightly depending on what I was doing (e.g., swallowing).  I simply could not feel this before due to nerve damage, and I now understand why Dr. Gunson does not allow me to drink through straws, blow my nose, or talk much during the day.  Kim, one of Dr. Gunson's staff, reassured me that this is normal and that the most trouble they have in this area (e.g., for relapse) is with patients that smash food against the top of their mouth when eating (another reason for a pure blended diet). Kim also said that the fact I can begin to feel all these things is a very good sign and that these feelings will only get stronger with time.  

It's amazing how much food is shown on TV and how big a part of our lives food is.  Of course this makes sense... but it's taken for granted until it's no longer available.  Although I blended anything and everything I wanted during the holidays, it also surprised me how difficult it was to watch a simple plate of bread/rolls pass by and not be able to grab one and take a bite.  Kim said the desire to eat real food will only get stronger too.  

During the appointment, Dr. Gunson made some more adjustments to my cheeks and now, two days later, I'm swollen again.  Same thing happened last week, and it's nothing like what happened after surgery, but it is still uncomfortable.  I also came down with a minor bug (sneezing, runny nose, hurts to swallow) which isn't helping, but benadryl helps a lot.  

One other piece of good news: every time we see Dr. Gunson, he often wonders aloud if he should change my dental wire in my upper jaw.  I thought making the change was a sign of progress and the lack of the making a change was a sign of non-progress, but he clarified two days ago that the less he has to do, the better it means for my recovery.  

About a week ago, I started feeling (fairly frequently) itches in my chin, but I can't scratch them because my chin is still completely numb!  My lower front hook has also become more painful when I put the elastics back in.  Additionally, I can also feel how tight the medium-strength elastics really are.  Kim says all of these issues are good signs for nerve recovery and that they are all likely to get stronger as I recover further.  The lesson?  If you have major jaw surgery and are lucky, your nerves will recovery quickly... and then you'll feel all the pain (and other not-so-fun things) that you haven't been feeling before they started recovering.  Yay for recovery?

To try and bring back a small sense of normalcy to life, last night I washed all the dishes from two meals (lunch, dinner prep, dinner post-consumption) on my own for the first time in a month.  By the end, I was completely done with activity.  Today, I took a shower, went for a 0.75-mile, slow walk around the neighborhood, and wrote this blog post.  It's been a very big day and now I'm tired and have a headache.  I had some other, small things I wanted to get done today (like finally put away the small number of clothes that I haven't yet put away from our holiday trip) and I'm not sure if they are going to get done.  It always surprises me how I can sit around and do nothing and feel like I can get up and do a lot of things, but that when I do get up, I can't actually do very much at all.  

Now, about that little-big detail not previously mentioned:

During the surgery, one of my nerves in my lower left jaw was severed.  Out of respect to me and my privacy, Amy didn't want to post this little-big detail on her own - she wanted me to do it, if I chose to do so.  Going into surgery, I knew this was a risk, but I also expected this to be a relatively low risk because my nerves in my lower jaw are lower than most people's nerves (which is good for this type of surgery).  

The night of the surgery, Amy and my mother said that everything went well and that the part that was expected to be the most difficult - trying to find solid bone - actually turned out extremely well.  This was a huge relief.  The next morning, when Dr. Gunson came by to check on me, he told me everything that happened during surgery as it happened.  I was surprised and terrified when he told me that my nerve had been severed.  Immediately my mind was flooded with thoughts of "Oh my God, what have I done?" "What does this mean for long-term recovery?" "Did Amy and my mother know about this?" and "Why is this a surprise? Oh, right - because so far everyone has told me that everything went well!"  

Fortunately, Dr. Gunson has an amazing presence and leads by example.  He waited, calmly, as I processed what he had just said.  Noticing that he wasn't freaking out helped calm me tremendously. Once I was ready to hear more, he explained all this means, in the worst-case scenario, is that I would not have sensation in a very small portion of the left side of my chin, but I would still be able to control my muscles (so not quite like a stroke victim).  Hearing this, too, was a huge relief. Going into surgery, I knew this kind of outcome was a possibility and I had already accepted that it might be a price that I may have to pay for a lifetime of being able to sleep, and it is a trade-off I chose to make (and still would if I could do it over again).  

Dr. Gunson went on to explain that he investigated what happened. Based on what he saw (the nerve was not severed near one of his cuts), it wasn't his cutting that severed directly by his actions but rather indirectly.  Namely, he cut and fractured the left side of my lower jaw first and the nerve was fine, and it was severed when he fractured the right side of my jaw.  Dr. Gunson then said that severing a nerve in this way (i.e., when fracturing the opposite side of the jaw) has only happened twice before in his entire 15-year career.  That's not really a consolation, but it does reinforce my belief that I am "special" in some really unfortunate ways.  (In a future post, I can comment on how incredibly unique my whole facial structure is - one out of several million at a maximum.  If only I could be this "lucky" in Vegas or the lottery!)

Finally, Dr. Gunson also explained that he did everything he could to give my nerve the best chance for a full recovery.  Namely, he pulled the nerve across the 17 mm gap he created during the surgery and cleaned up the nerve canal. Unfortunately, he wasn't able to connect the two ends or tie them together as it would have required pulling on and further damaging the nerve elsewhere. A good family friend of ours has told me that she's had two of her nerves severed during previous surgeries (not jaw surgery, though) and in both instances they eventually came back to 100% (though it did take a very long time).  While that is comforting, there is a difference between simply severing a nerve and creating a gap between the two nerve ends.  

Dr. Gunson said that, in these instances, only one in five of his patients have recovered to 100% of normal sensation.  While this is not the reassurance I wanted, and I do not yet have any sensation in that portion of my chin, the other sensation/recovery that I have had to date is pretty far ahead of average and a good sign for recovery overall, so I'm trying to stay hopeful.  I'd really like to have enough sensation to at least know if I have food on my face in that spot, but at this point, only time will tell.  Wish me luck!

Happy New Years (almost!)

Those of us on the west coast will be celebrating the new year in just over nine hours, though I'm not sure I'll be joining. I'm not going to push it, and for most of my recovery, I've felt tired by 9pm and very achy and extremely ready for bed by 10pm if I'm not in bed by that time.  Then again, it's also generally taken me two+ hours to get to sleep, so perhaps I'll go to bed at ten tonight and then ring a bell (since I can't cheer) for a few seconds at midnight just before I nod off to sleep.  

I hope this year is a good year for all!  Happy New Year!