Thursday, June 2, 2011

My Genioplasty Surgery.... June 1, 2011

So, I've talked a lot about my son, Aiden, in this blog...because, well, he is my life.  But this blog is also about my experiences in dealing with Nagers Syndrome.  I, myself, have had many experiences related to this genetic syndrome, and although I never want to be defined by this syndrome...I have begun to realize that these unique experiences have shaped me into the person I am today. For a while, I didn't even want to acknowledge this syndrome's existence...I wanted to never speak of it.  But once my son was born with Nagers, I soon realized that there is NO shame in it.  It is something we were born with...a couple of hurdles to over come that actually make us stronger...more compassionate towards others.  I realized that I needed to share our experiences with everyone...because it is such a rare syndrome, and the more people learn about Nagers Syndrome, the more people will understand and accept it.   Every now and then I wonder if I spend too much time talking about some of our issues, maybe dwelling on them too much, but then I think...hey...much of our lives are spent dealing with issues...with Aiden having surgery after surgery, Aiden having a trache and g-tube, etc.  I have recently myself gone through a huge surgery and I find talking about it VERY therapeutic.  Which is the COMPLETE opposite of how I felt about dealing with surgery when I was in high school.  When I think of that experience...I shudder.  So, this particular entry is all about me and my recent genioplasty that I had done May 27th, 2011. 
I guess it all started 40 long years ago.  Like Aiden, I was born with micrognathia...which is the correct term for small lower jaw. This is a common trait among those who are born with Nagers Syndrome.  Aiden's micrognathia was much more severe than mine...resulting in the need for a tracheostomy due to his tongue blocking his airway.  Aiden was luckily born at a time when jaw distractions are a common procedure.  He had his done last September with incredible success.  I, myself, had to endure 15 years of living with this small chin, which you wouldn't think would be such a big deal.  But, believe me, once I got into middle were horribly cruel.  (I still don't understand why...)  It still makes me angry to think of the effect it has had on my teenage made my self confidence next to nothing, made me beyond shy, it made me hate myself, my social life was zero...and although I did have friends and family that always said I was beautiful inside and out...I never had a chance to experience high school like most teens. When I was 14, I had my first procedure... a balloon placed right below my chin that was, over I believe a month, slowly filled with saline water.  This slowly stretched my skin to allow room for my chin implant that was to be placed as I turned 15.  That was a lovely time.  I felt like a bull frog that whole summer, but I thought it was definitely worth it!  When I turned 15, I had my first chin implant surgery.  I was so excited!!!  I remember very little of the whole was quite a blur.

As it healed, however,  I soon was too big!  So basically, it went from having insecurity about having a chin that was too small to an insecurity of having a chin WAY too big.  And the kids at school definitely noticed my change, but not in a positive way. 

Thankfully, the implant was so big, it actually started pushing through the on my 16th birthday, I had another surgery to correct the problem.  (HAPPY BIRTHDAY TO ME!)  This surgery had a much better result...although I was still insecure about the scar under my chin...but I think we all have our insecurities, am I right?   After this surgery, I graduated high school...still as shy as ever...then I was off to college. I started a  new a new person.  A person with a history no one knew about.  I started to find confidence grew...I broke out of my shell.  I lived my life and here I am today.  With a wonderful life, a beautiful son and an incredible man.  I actually wouldn't change anything that has happened in my past, because I wouldn't have what I have today.

I guess my pain started right before I got pregnant with Aiden.  I started to get abscesses on one of my bottom teeth...and root canal after another didn't make it stop.  Antibiotics didn't make it stop.  It was a mystery to my dentist.  Then I felt something along my gum line and a light bulb went off in my head.  Is that my implant????  I looked in the mirror...and wouldn't you know was exactly that!  I knew it in my heart.  And from that moment, I started to do research.  I found  that, although, very rare, it is possible for an implant to erode into the roots of teeth and start to cause pain and other issues.  I talked to my dentist and right away he said "nah...that can't be it."  So I went to my doctor...and he agreed with me and referred me to an ENT specialist.  Boy was THAT a waste of time.  He didn't think it was infected or the cause of the problem.  He told me I should go to the facility that performed  my surgery 25 years ago to see what they thought.  That's exactly what I did.  Finally, someone listened to me.  I saw a couple of different specialists and they agreed with me.  They referred me to one of their surgeons...Dr. Pravin Patel.  YEP! Aiden's miracle worker surgeon!  I couldn't believe it!!!  The first visit I had with him...we REALLY threw him for a loop, because Aiden and I have different last names.  When he saw Juan and I, he did a double take.  It was pretty funny!  Right away, Dr. Patel started planning what he wanted to do with me.  I wasn't to ready to get my hopes up...I've been let down too many times.  Soon, I actually had a surgery date....May 27th.

A week before my surgery, I went in for a pre-surgery visit and Dr. Patel explained what he was going to do. First he was going to go in and remove the implant that was causing the problems.  Then he planned on preforming a genioplasty....which is sawing the front part of my lower jaw bone apart...moving it forward...and filling in the space with artificial bone.  I was nervous and excited...all rolled up in one.  To be honest, I've never been happy with the results of my implant surgery that was done 25 years ago...although it was satisfactory.  I thought, this is a chance for something better!  I still didn't want to get excited till I had that IV in my arm and they were wheeling me into the operating room.

Soon, that day FINALLY arrived!  The night before surgery, my mom came in for support...and to help me with Aiden while I recovered from the procedure.  I was so thankful for that!!  Aiden was thrilled, too! Juan and I had to be at the surgical center by 10am.  The night before was HELL...I had heartburn and acid like I've never had before.  I guess my nerves got the best of me.  Many things went through my head.  How will I take care of Aiden?..will I hate the results? What kind of pain will I be in?...yada yada.  Finally, I just told was going to be okay...I've got the best of the best surgeon working on me.  I told myself to have faith.  Once I got there and I was checked in, I got dressed into my lovely hospital gown and I was brought to my recovery area to have my IV placed and to talk to the anesthesiologists and Dr. Patel.  I was a nervous wreck.  Thank God Juan was there with me!  Once they gave me the sedation drug...I was like....go ahead, do anything you want to me...I was in la-la land.

Next thing I knew, I was awake in the recovery room with a numb face and a sore throat.  I felt a little queasy but I never got sick...they put a nausea patch behind my ear before surgery. I swear, as soon as I woke up, they almost immediately had me sit up in a chair and went to get Juan so he could help me get dressed.  I was soooo dizzy...I just wanted to go back to sleep. Next thing I knew, I was dressed and Juan was off to get our car.  A few moments later, the nurse put me in a wheel chair and we met Juan outside and off we went, to recover at home.  It was the longest drive was an awful feeling.  I was woozy, dizzy, in some pain.  I just wanted to get home and into bed!!!  25 minutes later (which felt like an eternity), and we were home.  Aiden, thankfully, was still napping and my mom and Juan helped me into my bedroom and got me all comfy.  I took some Advil and wrote some notes....I couldn't talk much at all.  My tongue was swollen, my mouth was swollen, and my throat was sore.  UGHHHH!  Soon, I was drifting in and out of sleep. It wasn't until about 10:30 pm that evening till I woke up and was kind of alert.  Aiden saw me for the first time and it was so cute!  He looked at me and tilted his head, all concerned. He tried to touch my face and the bandages, then he took a piece of tissue paper and draped it across his chin...just like mama.  Then it was like nothing was wrong.  He was glad to have mama there with him.

^ Evening Following My Genioplasty ~ May 27, 2011

The next few days were tough.  Not so much because of pain... but eating and talking were very difficult.  I started with a few shakes...vanilla and chocolate Ensure.  And some chicken broth.  That was NOT fun.  At first it wasn't bad...then it just wasn't cutting it!  I was always hungry.  Plus, my tongue was so swollen.  Talking was a chore!  I found that Advil was my best friend.  Also,  Dr. Patel had me on antibiotics...and every time I ate (or drank))...I would follow that with a warm salt rinse to avoid any infection because the incision was in my mouth.  I didn't like what I saw in the mirror...I compared myself to a female Jay Leno...but I knew that I was very swollen.  Numb and swollen.  As time went by, I slowly tried different foods...macaroni and cheese, pudding, yogurt, scrambled eggs.  Finally I could handle bread...SOFT bread.  It was nice to have solid foods again.  I was so grateful that by Memorial Day...which was a gorgeous day, I was able to join in the festivities.  I made it outside for an hour or two.  I enjoyed it quite a bit! 

Memorial Day 2011
By Tuesday, more solid foods, more outside time with Aiden.  I was so thankful to have my mom there.  Sure, Juan helped as he always does, but to have my mom there to entertain Aiden constantly as I recovered was priceless., was my post-op visit with Dr. surgeon.  The appointment was at 8:45am...and of course Aiden didn't let either of us sleep the night before.  But the visit was quick and painless!  Dr. Patel had me remove the bandages...which was pretty much glued on with cement.  Then he told me all he did on the day of my procedure.  He told me that talking out my old implant took twice as long as it normally was HUGE!  I actually got to see it! He told me it was causing damage. He told me that he really took his time shaping my new chin...although it's impossible to see it now since it's extremely swollen.  He made a real effort in making my new chin more feminine.  That's when he let me know that in 6 months, I would need another surgery to remove some plates that are holding my jaw in place...but that's great, because he also said, if there are any tweaks I wanted done, it could be done then.  I got to see my reflection in the mirror without my bandages...and yes, I still looked like a pelican...but Dr. Patel reassured me that the swelling would go down significantly and that I will be pleased with the results.  I trust him!! Soon, we were on our way home.  My mom and Nurse Sandy took Aiden to the Little Red School House while I slept.  I dreamt of a new me....

Below, Aiden is enjoying some sweet potatoes.  We've got him starting to eat by mouth again...YUMMY!!


  1. Hi
    My name is Jenna and I came across your site. Aiden is an amazing, courageous strong and determined fighter. he is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook.

  2. Hey Chrissy,
    My name is Spencer, my little girl was born with Nager's syndrome back in April of this year. Your blog is very informative and My wife and I would love to talk with you sometime. We are currently looking at jaw distraction surgery and locations for this type of operation. My wife has a blogsite.
    Take care,
    Spencer and Blair

  3. Hi, I'm not sure how I stumbled upon your blog, but I'm glad I did. I had never heard of Nager's syndrome. You and Aiden have been through a lot. Thank you for sharing your story! You look beautiful. :)

  4. First, I'd like to say that I really admire your strength with all the heartaches you had to go through due to Nager's syndrome. Second, I guess is like a question. Have you thought or heard of jaw surgery (orthognathic surgery, in your case mandibular advancement with genioplasty)I think that would have been the best method if what your after is a good profile balance. What do you think? There are heaps of people showing off their video on youtube who's gone through this type of surgery. ANyway, I wish you and Aiden good health. Take care now.

    1. Hello! Actually, my surgeon wanted me to do a jaw distraction like my son had. Then he asked me how much energy do I have. I laughed at that question, but it was a good one. Now, if I was twenty-something...I may consider such a drastic surgery...but I'm 41 with a child with many obstacles and challenges ahead of him. That's why I opted for just the genioplasty (after he removed the implant that was giving me trouble). I'm going in for another surgery in the spring (to remove a plate)and my surgeon told me if I wanted anything else done, to let him know. We'll see! :-)