Surgery: Part 1

Surgery was two weeks ago from tomorrow.

On the morning of Tuesday, August 20th my mother and I flew to Boston for surgery scheduled at 9:30 am on Wednesday, August 21st.  We were told in our pre-surgery materials that we would need to have a strict regimen of ice packs following the surgery.  Realizing it would be helpful to have a second pair of capable hands, my mother's dear friend Carol volunteered/agreed to meet us in Boston for the adventure.   Carol lives in Canada, but was visiting her previous home in Tulsa, Oklahoma up until she joined us in Boston.  It seems Carol has always been there ready and eager and help in anyway, no matter what, for most all of my major adult life events.  My mother and I are very lucky to have her as a friend.

Carol was waiting for us at the airport when we arrived.  We picked up our bags.  Mine was large but mostly stuffed with a pillow from home, my own blanket, and DVDs to watch while I was awake and recovering. 

We got to our hotel and were very thankful that there was a CVS directly across the street from us and a Whole Foods nearby.  We stopped at an Italian restaurant for dinner, Antonio's that was delicious.  (I only wish I could have had a glass of wine, but that is not an option on the pre-surgery diet.)

We ate some cookies from Whole Foods until around 11:30 pm and turned in for the night.  

When we got up in the morning we got ready and walked from our hotel to Mass Eye and Ear Infirmary.  We went to the surgical floor marked with an "S" on the elevator and ended up in a pretty large waiting room.  

We waited for about 15-20 minutes and I was surprised once they took me back how quickly everything got started.  They took my vitals, got my clothes changed - yes they gave me the fun socks with the super grippers on the bottom so I would not slip.  I don't remember if it was the Chief Resident or the Fellow but someone mentioned that they have a full house for my surgery, about 10 doctors ready to watch this surgery.  I was quite popular!

While in recovery I remember only two things, asking for my mom and telling the nurse that I didn't want to feel anything and feel free to give me whatever pain meds she was authorized.  I got what I wanted, my mom was there and no pain (that I remember).  

As it turns out the adult floor was all full by the time my surgery was over and there wasn't any room for me, so I got to spend my night in the hospital on the pediatric floor.  There weren't any kids on the floor over night, besides they don't make adults share rooms with kids, so I had a room to myself, and the nurses were great!

The other nice thing about being on the pediatric floor is that they didn't try to kick out my mom.  She was able to sleep on the convertible chair that lays down into a bed.  If I'd been on the adult floor, they probably would have kicked her out.

The thing that was not so great, was the bandage around my head.  The bandage was wrapped under my chin over the top of my head, and it was very, VERY tight.  Because it was so tight it kept sliding forward and squishing my face.  We took some pictures where all you can see is my nose, puffy cheeks and lips because the bandage was slipping forward.  (Since then, mom and I have discovered a great strategy involving some large hair clips we will be sure to take with us for Part 2.)

The second thing that really stood out to me was that they (the hospital) didn't have any fancy ice packs for after surgery care.  They dump ice chips into a blue medical glove used as a baggy.  We took some funny pictures with these blue hands sticking in and around my head dressing.

Something I wasn't prepared for were the two incisions on the inside of my upper lip.  When I woke up and drank some water I noticed the stitches in my mouth.  It made sense that they use those holes to pull the nerve across my upper lip, it just didn't remember that being mentioned before.

Thursday morning, everything looked good and I'd had some breakfast, so they let me out.  I even felt well enough to walk myself back to the hotel.  (Mom and I had previously debated on whether she'd call a taxi to carry me 2-3 blocks back to the hotel... I won and made the venture without any major incidents.)  Mom and Carol took great care of me on Thursday afternoon to Saturday morning in our hotel room with two twin beds, a pull out couch, and a kitchenette.  It was a great set-up for what we needed.

Saturday, August 24th, Mom and I flew back to Iowa, Carol flew back to Canada and healing process has been going well for two weeks.  Things have been slower than I had hoped, but it's pretty much what the doctors had said was normal recovery time.  Mom, Dad, I went over to Iowa City to see a doctor there who also preforms there surgeries and he took out my stitches and answered our questions with great patience.  I will continue to go see him in Iowa City for future Botox shots, post-op after the second surgery and other miscellaneous needs.

My foot on the leg they took the nerve from is driving me bananas.  It tingles and itches when I'm trying to sleep or after I walk on it.  It's all I can do to focus my mind on other things.  If I try hard enough I don't feel it anymore.   

The site of my incision on the side of my face is numb.  The numbness will go away in a few weeks - it was expected - and I can tell it's improved a lot since surgery.

My vision is a little different due to the eyelid weight.  I already had 2 or 3 astigmatisms in my left eye and wear glasses for reading and computer work.  The pressure of the eyelid weight can change the shape of your eyeball a little bit too to add / change the astigmatisms.  The doctor recommended, I get my eyes checked about once a month, until the eye doctor notices that there's little change in my vision and then I'll probably just get a new lens prescription for my glasses.  Since things are still healing a settling, I wouldn't want to rush and get new lenses without being certain this is where my vision will settle.  Hopefully there aren't too many headaches in my future, and any typos will be tolerated.

I'm going back to work tomorrow and am optimistic that I'll be able to have enough energy to make it through the rest of an already short week.  Thanks for reading this exceptionally long post, and thank you for all of the prayers and well wishes.  It gives me courage and strength and faith on this journey.

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.

The Botox Effect

As promised, the story about the Botox.

About 11 years ago, my last trip to Mayo, the doctors said they could Botox the good side of my face to help add symmetry.  At that time they said it was an option to reduce some forehead wrinkling, but they were concerned how the Botox would travel through the structure of my face.  Since part of it is paralysized the doctors were not certain that the Botox would stay where they wanted it. Never did they say anything about using Botox to add symmetry to my lower lip.

Fast forward 11 years to 2 weeks ago.  The doctor in Boston mentioned that using Botox on the good side of my lower lip could help with some symmetry.  The issue, she explained, is that the good side is too strong and it pulls the weak side over.  Below is a picture of me trying to show my bottom teeth without any treatment (no Botox).

Botox use, in general, isn't quite as scary in 2013's society as it was in 2002, around the time Botox was mentioned at Mayo.  Times have changed.  While I was very skeptical about using Botox in 2002 (when they weren't even sure how it would react), I felt very confident with the doctors in Boston.  They offered to give me a shot of Lidocaine so I could temporarily see what the Botox would do.   The Lidocaine only lasts 2-3 hours. My thought was, "What would it hurt to try this out and see what it does?"  The answer is this:

My mom and I immediately why the doctor had suggested this.  My brain is telling my muscles the same thing in both of these pictures.  Only in the second picture, my good muscle isn't pulling as hard on the weak side.  I can still pull the good corner of my mouth over further than is shown in the after picture, but if I'm just trying to evenly show my bottom teeth, this is the result.

Ultimately I did go ahead and get the shot of Botox about 10 minutes after the Lidocaine (while I was still numb).  Realizing the Botox only lasts 3-4 months, I wanted to bring this change home with me to give it a real test drive.  If I want to continue to get the Botox shots I can.  The doctor said if I still like the results after about 4 shots (a little over a year), she could go on the inside of my upper lip and snip a couple muscles to make it permanent.

Who has noticed this change?  Mostly only the women in my family - mom, sister, grandma - have noticed any change.  Showing your bottom teeth isn't necessarily something you do every day; modest reaction is to be expected.

I am just so thankful to the doctors who were smart enough to ease me into the process with the Lidocaine.  It's nice to have a 2-3 hour sample.  It's nice to be offered little baby steps towards change.  I can see how it feels and help predict what it will be like if I do have surgery and if it is successful.

Why have surgery?

A question came up this week:  Why have surgery?

Is it vanity?  Is it for curiosity of what may be possible?  I think it's more about self-actualization.

I think about people who have a trauma and lose functionality.  When they smile, they can physically feel a difference from before the trauma and after.  They don't have to see themselves in a mirror to know that something is different.  They have built up muscle mass over time so when they lose functionality, there is usually significant drooping.

For me, I don't have any comparison.  Because my face has always been this way, when I show emotion, the self-image I have of my appearance is similar to most everyone else.  When I smile or laugh, I can't feel my facial paralysis.  If you ask me to show you my teeth, I physically feel like I am showing all of my teeth.  I have to look in the mirror or see a picture to know that the physical movement I'm performing is not actually fully functional.

I go about my day, and never once, do I feel like my range of showing emotion is any different than the person I'm talking to.  If I were to draw a self portrait based on what I physically feel when I smile, I would draw something pretty close to symmetrical.

Mirrors and photos and videos force me to see that the image in my head is not reality.  My self-image and my actual appearance are so different, it's almost a minor experience of shock when I see myself.  I look at my face, and it's not what I expect to see.

Sometimes people tell me that they are worried about my self-worth and self-esteem when I am honest about my emotions and self-image.  My response to them is, bug off.  I'm not sure I know anyone, who when put in my shoes, wouldn't have a few moments (or even years) of self-esteem issues.  Let's be honest, middle school for the average kid = big ball of pre-puberty confusion.  Middle school for the average kid + facial paralysis = an indescribable mess of typical pre-puberty, emotion and angst.  My life has been a lot of adult level soul searching of trying to answer questions of why and how since a ripe age of 4 or 5.  I have done and continue to do the best I can with what I have.  This is the long way to saying I'm not thinking about surgery to boost my self-worth.  (I may or may not write another blog post about the emotional part - still trying to figure out how much to expose online.)

Why do I want to have surgery?  So I can know, how the world sees me is closer to how I envision myself.  Today, that's the best answer I can offer.

Options from Boston

In both Cleveland and Boston, they took many photos and video showing the same sequence of movements: relaxed, eyebrows up, close eyes lightly, close eyes tightly, small smile - lips closed, big smile, show your bottom teeth.  In Boston we started with these photos and video.  Next, we when into the doctor's office.  This is the first time I've ever been in a doctor's office that actually looked like an office.  It wasn't an exam room.  It was like on TV shows or movies when patients are in an actual office with book cases, a gorgeous view, couches, and beautiful wood desk.  The doctor had me sit across from her at her desk while her residents and PA sat on the window sill behind her.

The doctor after watching me talk for a few and do some movements, she explained how her office works.  She only sees new patients on Fridays.  The rest of the week she's in surgery.  She explained that she was going to speak off-the-cuff on her recommendations, but that in a week (May 10, 2013) she and her team will look again at all my photos and videos and come up with an official plan.  After the plan is finalized, they will send me a letter with options and recommendations.

While speaking off the cuff of what she'd propose to do, she said, due to the movement I do have available, she'd want to treat my face zonally.  She proceeded to give her recommendations from the top of my face, working her way down.

Forehead

Both in Cleveland and Boston they were not concerned about getting movement in my forehead; they were more focused on wrinkle control.  Cleveland said specifically they would not recommend a muscle transfer for my forehead, because the forehead surgery is notorious for being unsuccessful.  They also mentioned, that most people, when they look at your face, don't pay much attention to your forehead.  

Because my strong eyebrow has been in use for so long, it is actually a little lower than my weak eyebrow.  Also, I'm starting to get some aging wrinkles on the one working side, and not the other.  The doctor recommended Botox for my forehead.  By injecting Botox below my eyebrow on the good side, it would raise that eyebrow a little bit to make my eyebrows line up better.  Then by injecting Botox into two places in my forehead it would reduce the movement of my forehead enough to discourage those wrinkles.  Below is an image of where they would do the Botox injections:

The idea around wrinkle control is that the more the wrinkles are uneven between the two sides of the face, the more people will notice there's something off about my face.  There are strategies to gain wrinkles on the weak side and reduce wrinkles on the strong side.  For my forehead the goal is to reduce the wrinkles on the strong side.

Eye

Previously when I was at Mayo in Rochester, 10 years ago or more, they said that they could insert a gold weight in my eyelid to help encourage more closure.  In Boston, they recommended putting in a platinum weight.  Platinum is heavier, so they need less material, so it is less noticeable.  The doctor was very specific to let me know that patients, like me, who have paralysis from birth usually end up hating this treatment.  While I don't have any dry spots on my eyeball and it's currently healthy, I have built up a callus from not being able to close it for 29 years.  While the doctor did advise it would be a good idea to do to protect my cornea a little more, she said that in people like me she often ends up taking the weight out because the patients don't adjust well.  She did say to take the weight out, it was only a 10 minute procedure in the office.    So something to think about.

Nose

For my nose, she would take muscle sheath from the outside of my leg, to create a tendon that would pull my  nose back into place.  The tendon would stretch from my nose to somewhere close to my ear.  It would not be attached to a muscle group like the Cleveland proposal.

Upper lip

There are three options for this zone.  The goal is to get a smile crease similar to what I have on the strong side.

Option 1:

Similar to Cleveland, she would take a sheath from the outside of my thigh to make a tendon.  She would then attach one end of the tendon to my upper lip and attach the other end of the tendon back by my ear somewhere.

Option 2:

This is a one-phase surgery with a 90-something percent success rate.  There are four muscle/nerve groups, on each side of your face, that help you chew.  She would divert one of those chewing muscles to the upper lip area to gain movement there.  In order to activate this smile, I would need to bite down first to activate the nerve/muscle group.  

I'm not sure I like this plan very much.  Yes, I'd be able to pose for pictures, but who laughs while clenching their teeth?  Doesn't seem very natural to me.

Option 3:

This is a two-phase surgery and has a 1 in 5 chance it won't work.  This is the option of using a nerve from the outside of my calf to graft from the good side over to the weak side, then in the second surgery attaching a muscle from my inner thigh to the nerve graft.  Essentially, when I activate the right side of my face, it would simultaneously activate the left side. 

They said this would be the best natural smile.  It offers the most symmetry.  It does have a higher failure rate.  I asked what failure meant, and was told I wouldn't be out anything.  They were very confident they would not damage any of the movement I already have.  So if this surgery wouldn't work we just move to a plan B.

Lower Lip

The issue with my lower lip is that the strong side is too strong.  When I smile and talk, the strong side pulls the weak side over more than necessary.  The recommendation here is to use a Botox injection to weaken the good side of my lower lip to reduce some of the pulling.  Below is a picture of where they will put the Botox:

I did actually go ahead and get the lower lip Botox while we were there.  It only lasts for 3-4 months.  Watch for my next post.  It will be all about my first Botox experience.

Options from Cleveland

As mentioned in my previous post, my particular set of strong vs weak nerve/muscle groups is pretty unique. When we saw the doctor in Cleveland, he said he was not surprised that others had said they wouldn't do anything.  He also did not recommend doing a muscle transfer thinking it would be too bulky since I already have a muscle mass from the corner of my mouth to my ear.

His recommendation is to take the sheath (outer lining of a muscle) from above my ear, in the temple area of my head) and use that sheath to make a tendon.  He would then connect my upper lip and nose with that tendon to the muscle that is working.  The benefits of this approach is that the surgery is 2 hours, and it would be a natural smile.  (Meaning I wouldn't have to train my brain or do any physical therapy; the muscle I already have would be doing all the work to correct my upper lip and nose.)

Below is a picture that attempts to show what they are thinking about.

One of the funnier moments of the Cleveland appointment was when I asked the doctor if he would have to shave my head to get the muscle sheath needed for the surgery   The doctor responded, "We are plastic surgeons, we don't shave anything."

I asked how long I would be out of soccer and he said only a week or two.

I was very surprised by his recommendation.  Everything I'd read online was about taking parts of the leg to aid movement, the idea that he wouldn't cut into my leg at all is very appealing.

We felt so confident and comfortable in Cleveland, I asked my mom, "Do we even need to go to Boston?"

I am a rare gem

This week, my mom and I went to Cleveland Clinic and the Massachusetts Eye and Ear Infirmary (part of Harvard med school in Boston) to meet with the top doctors in the field of facial nerve animation.  We heard a lot of interesting options and got some great information.  I'm so happy we went both places.

The doctors I've seen have to specialize in ENT, plastic surgery, and neurology to do what they do.  They are pretty amazing folks.

One of the things that I learned this week, is that I am a rare gem.  In Boston, I told the doctors the story about my tonsillectomy and how the ENT who had performed that surgery spoke to me about my paralysis and asked me, "Do you know how rare you are?"  After listening to this story, the doctor in Boston immediately responded, "He didn't even know how rare you are.  In my 13 years of doing this, you are the 4th person who has presented with a congenital paralysis with this configuration of movement."

I could tell both in Cleveland and in Boston, the residents and fellows working with the primary surgeon were told they were looking at a special case.  I was pretty popular.

I will blog more about the options we were given and my first shot of Botox, but for now, I'm just thankful to be home!

Introduction

I've always counted myself as a lucky one.  I never lost anything because I never had it from the beginning.  I was born with my facial paralysis with no explanation why.  There was no birth trauma and no risky behavior during pregnancy.  God just chose me.  About every five years, I've gone back to the doctors to see what the options are.  Six years ago they told me about a gold weight they could put in my eyelid to help me have better eye closure.  They also told me they could botox the good side of my face so it would be more parallel.  I heard I was, "too advanced for technology."  (I do have movement in one small muscle group off the corner of my mouth.  I was told no one would attempt surgery on me for risk of damaging what I do have.)  I haven't had any problems with dry eye, thankfully, because many people with my condition do.  And the idea of botoxing the movement I do have seemed ridiculous.

This leads me to today and the creation of this blog.  After some online research, I'm switching doctors.  I'm headed to Cleveland and Boston to see if technology has caught up with me yet.  Yes, I am doctor shopping, because if I'm going to have someone slice my face open, I want it to be someone I feel I can trust.

The part of this journey I am struggling with is that after making it through childhood and adolescence with a facial paralysis, I am wondering what I'll say if they tell me I am a surgical candidate.  I'm so used to hearing there are no options for me, and I've made it through all of the hard (self-discovery) parts of life, do I really need/want to change now?  I can keep taping my eye closed when I have problems sleeping.  My eyeball is quite flexible after so many years unable to close, it really isn't that bad (and a fun party trick).  If I am able to smile, will I need braces?  No use paying for straight teeth when you can't show off half of them.  But for my 30th birthday, to give myself the smile I've always felt I had, would be pretty incredible.  I'm not sure where this road is leading.  I don't even know what the options are at this point.  All I can do is be prepared to ask thoughtful questions, discern over the answers, and pray that I continue to have the strength to handle whatever choice I make.