News from Boston

I apologize for holding out for a couple weeks, things have been busy.  I got the letter from Boston with their formal recommendations.  There weren't any big surprises.  They recommend Botox in my forehead and below my lip.  They want to try a platinum eye weight in my eyelid to help with closure.  They want to do a cross-face nerve graft (the two-phase surgery), and use the muscle lining to pull my nose back into place.

I needed to wait for the letter to make a final decision, but it didn't take long after opening the mail.  The first  of two surgeries is scheduled for August 21st in Boston.

While other options may offer a higher percent of success, this option offers the most natural outcome, and does not risk the movement I already have.  Why not go for it?

This first surgery they will insert the eyelid weight and complete the nerve graft.  The second surgery will probably be sometime in February next year, and that is when they will transplant some muscle into my cheek and complete the procedure for my nose.

With a 1 in 5 chance that the surgery doesn't work, I'm trying to control the things I can.  I've been getting acupuncture since the beginning of the year to help with energy levels and general well-being.  With surgery in August, I hope to focus on stimulating the nerve they are going to harvest from my leg and stimulating the nerves and blood flow in my face.  Luckily, I was misinformed about my health insurance and I just found out today that acupuncture is covered, so that's a financial burden lifted.

Since they are going to transfer a piece of thigh muscle, another thing I can try to do is give them the best possible muscle to work with.  I don't want them cutting out some lumpy piece of fatty tissue and putting it in my face!  So I've started working out with a personal trainer once a week.  Last Friday was my first day and it went well.  I'll continue to play soccer this summer, and do workouts on my own, but I'm out of practice going to the gym regularly so having a person to keep me accountable and give me new ideas is great.

Disclaimer:  I have not consulted the doctors on whether either of these efforts will actually raise my chance of success. I never asked them about the benefits of either.  I'm doing these things because it's a part of the process I can control and can only think that it won't hurt.

Even though this process is just beginning, I do want to thank everyone for sending over their positive thoughts and prayers.  Having the support of friends and family makes this less scary.  To think this process started with a late night Google search just a couple months ago and surgery is now only a couple months away, is surreal to me.  Medicine and technology are amazing things.  Sometimes you wait 30 years, but human ingenuity continues to work to find solutions.