Saturday, November 5, 2016

7 Years Post-Op

Sam, Addie and I on our first day at Seattle residents.
Hello to anyone whose found their way to my little blog. It's been 7 years since my double jaw surgery. Please look back and see how far I've come. Some (I dare say, most days) I forget I even had jaw surgery. Never, ever thought I'd say that.

In the last year, in addition to being diagnosed with Ulcerative Colitis (an auto-immune disease), I've also been diagnosed with Rheumatoid Arthritis (another auto-immune disease). So combine that with my Marfan body has a lot going on....but my jaw is holding steady.

In terms of residual symptoms in my jaw/from surgery....I would say I have minimal jaw tension and have had one lip-twitching incident in the last year. Both, I'd say, are aggravated by stress.

I've had no dental work done in the last year and a half, besides the routine check-up and cleaning(s). The extensive work I've had done with Dr. Mac (tooth-fixer-extraordinaire) is holding up strong.

With not much else to report on, here are a few pictures from Halloween this year. Below you'll find: Rosie the Riveter, A Cowboy, and A Typical-Two-Year-Old/Toddler Ozzy (someone refused to dress up....).

This fall we also celebrated our daughter's second birthday! Here we are making chocolate cupcakes for her little birthday celebration. She is so truly loved.

Thank you for your continued support. If you every need a place to turn for advice or understanding, please let me know or take a look at my previous posts.

As always, SMILE on.

Wednesday, November 4, 2015

It's Been SIX Years!

Hey there devoted blog readers. Today marks my 6th anniversary of having my double jaw surgery...what I fondly call, My Jawversary! I used to make this a night of copious amounts of food I couldn't eat before surgery, but this year I plan to celebrate in just giving thanks in how far I've come.

Head-butting Queen
Our daughter is now a year old, and gave me a nice head-butt to the cheek last week. I'm a bit sore and still a little swollen (I've been taking tylenol as needed, but have not been heating/icing as I should). I know this too shall pass, and head-butts during a tickle session from your toddler are probably one of the best ways to get hurt.

Without looking back at my previous posts I can't tell you how many screws and plates I have in my face, what was used to replicate bone in my face, or many of the other details. I think it's testament to how far I've come. My jaw pain does not control my life. The only doctor I saw for my teeth this year is my dentist. That's a record. I haven't just seen my dentist since 2006.

Some observations about where I'm at now:

  • The cold still bothers my face (I'm talking 20deg F and below). Winter is coming, and I'm less than thrilled to be dealing with the cold and wrapping my face up; 
  • Neck tension makes my jaw tense and gives me headaches (this isn't new, and I have strategies for coping with this);
  • Being close to vibrations (such as loud speakers) still is uncomfortable;
  • I can eat anything I want, but I avoid hard nuts like whole almonds because I have no self control and will eat them till my jaw hurts.
To those of you who may be reading this and wondering if you should get surgery yourself- I cannot answer that question for you as we each have unique circumstances, but what I can tell you is that having jaw surgery changed my life for the better. The years up to and the recovery afterword were absolutely the most stressful and painful years of my life. There were many times I wanted to give up. But now, six years later, I can sit here and tell you that jaw surgery saved my life. Continued thanks to all of my family, friends, and doctors! 

Tuesday, November 4, 2014

5 Years Post-Op

When I started this blog I promised myself that I would continue to post updates for at least 5 years post-op. It was really challenging for me to find blogs beyond 3 years post-op when I was reading about other peoples experiences. I want people reading about personal experiences with jaw surgery to have some knowledge of what it's like not just a day, month, or year out - but years! 

Here's where I'm at today:

Nerves: The nerves in my lower lip only twitch when I am really exhausted or stressed (same as 4 year mark). Places in my face that I am still lacking some feeling- chin, lower lip, and gums. This lack of feeling isn't annoying or problem causing- it just is what it is...

Swelling/Pain: I still have days where my face puffs up a bit- usually in extreme heat/humidity, or when I have a lot of neck tension.

Plates and Screws: I still feel vibrations when at a concert where there is feedback from the amplifiers, so I try to stay away from concerts with a lot of feedback; however, this has gotten a bit better. The cold and air pressure seem to be the biggest triggers for plates/screw pain or annoyance. 

In the last year, a lot has changed in our lives- we've moved and had a baby girl (she's 1 week & 1 day today!). Jaw surgery is only a short time period in our lives- despite how it might feel at the time. I am so grateful to have had the surgery & I am able to continue on with life in a more pain free & functional way. 

Me, 5 years post-op & our baby girl
On a final note, I'd like to give a shout out to Mike Napoli of the Boston Red Sox (Go Sox!) who is having jaw surgery today! Best of luck, sir- I'm happy to share this jawversary date with you!

Monday, November 4, 2013

4 Years Post-Op

So, it's been 4 years since my jaw surgery...HOOORAYYY! It has been so long I feel quite disconnected from the experience. Well, other than knowing it was one of the most challenging experiences of my life. As a teacher I am constantly telling my students to persevere and that "struggling" can be a good thing, it helps us grow. This is exactly how I feel about my jaw surgery experience. No matter how challenging, I am so happy that I had the surgery done. I don't even want to think of the pain I would be in if I hadn't done it. 

Here's where I'm at today:

Nerves: The nerves in my lower lip only twitch when I am really exhausted or stressed (same as 3 year mark). I have almost all of the feeling in my chin and lower lip. I got the feeling back in the tip of my nose this year. I have feeling in my gums, but not full feeling.

Swelling: I still have days where my face puffs up a bit when I have chewed or talked too much, but it goes down when I get a good nights rest (same as 3 year mark). It also swells in the extreme heat.

Plates and Screws: I still feel vibrations when at a concert where there is feedback from the amplifiers, so I try to stay away from concerts with a lot of feedback (same as 3 year mark). Whenever I have a cold the screws near my nose get a little sore, but it goes away when my cold goes away. In the cold of winter I bundle up my face more than I would have before. My face is also a great air pressure gage. 

Here are a few pictures from my year....always smiling!

Day of Surgery & Wedding Day
Best Cake-topper Ever (From our Wedding)
New Years
Flashback: Day 13 Post-Op with Sam
A continued Thank You to my amazing doctors! Thank you to my friends and family who've been with me through this whole process!Thank you to my amazing husband who continues to support me today as he did then!  I love you all!! 

To all of those people who read my blog while on their own jaw surgery journey, remember that no two people have the same experience, and everyone heals differently. For me jaw surgery was the hardest & most painful thing (both physical and mental) I have ever gone through in my life. I know that it has made me a much stronger person AND I have never EVER regretted doing it. 

Lots of love and SMILES! -Mary

Sunday, November 4, 2012

3 Years Post-Op

Wow! Has it really been 3 years? It's very exciting to me to think of all of the progress I have made, and continue to make, yay! I am very happy I had the surgery, and my life has forever been changed for the better. A lot of positive changes have happened in the last year, Sam and I are engaged and getting married next summer (WHOOHOO!), I've changed schools and grades (4th grade!), my brother has had twins, and I'm sure there's more I am forgetting. So much to smile for!

This morning Sam and I celebrated my 3 year anniversary with bagels!

In the past year I have gone through a lot of testing for my joints. As I have posted in the past, I have pain in many of my joints. It is a daily battle for pain management. In the Spring I had an MRI for back pain. They found that I have a couple herniated disks in my low back, and I have dural ectasia. Dural ectasia "is a widening or ballooning of the dural sac surrounding the spinal cord usually at the lumbosacral level. It is one of the major manifestations of Marfan syndrome." This causes a lot of pain. Because of this discovery with the MRI, I was officially diagnosed (through genetic testing) that I do have Marfan Syndrome. This diagnosis is a comfort to know what is causing my joint pain, and how to treat the joint pain. It also explains why my body takes a long time to heal. Dr. Mac likes to call it "marfan-ing" when it takes longer for me to heal than the average person. While this currently does not have a great impact on my jaw/jaw surgery, it does help me understand why my recovery was so difficult. 

Pain Management: Physical Therapy 1-2 times a week, with at home exercises including yoga. Clonazepam (.5mg) before bed to help my muscles relax. My jaw still likes to tense up, especially when I am stressed. 

Recent Mouth/Teeth Work: Over Columbus Day weekend I went to see Dr. Mac to have gum surgery. Due to the massive amount of movement my jaw had, when my gum tissue healed there was some excess gum tissue/gum tissue that wasn't formed correctly over my new teeth location. To prevent gum disease Dr. Mac reshaped the gum tissue. I had this pink putty stuff put over the stitches, and I was back to a post-surgery diet for a couple of weeks. 

Ohhh look at that awesome bite! (You can see the pink putty used to protect the stitches.)
Dr. Mac came to my orthodontists office the following weekend to take out the stitches. Lucky enough, Dr. Gunson was there, too! Dr. Gunson and Dr. Chira observed while Dr. Mac took out the stitches....both ooo-ing and ahhh-ing over the amazing new look of my gums. That was a pretty great feeling; to know I had to have this gum surgery and the results not only would prevent gum disease, but look awesome, too! 

Nerves: The nerves in my lower lip only twitch when I am really exhausted or stressed (same as 2 year mark). I have all of the feeling in my chin and lower lip, but it doesn't bother me. I have all of the feeling in the rest of my face. 

Swelling: I still have days where my face puffs up a bit when I have chewed or talked too much, but it goes down when I get a good nights rest (same as 2 year mark).

Plate and Screws: I still feel vibrations when at a concert where there is feedback from the amplifiers, so I try to stay away from concerts with a lot of feedback. Whenever I have a cold the screws near my nose get a little sore, but it goes away when my cold goes away. With the gum surgery my plates were irritated a little bit more, but they are back to my "normal". 

At this 3 year mark, I am so happy at the progress I have made, and continue to make. Below are some pictures that show my progress, and where I am now. 

On the left, me a couple hours after surgery.
On the right, me at a wedding this summer.
Above: Sam and I after he proposed- April 17, 2012

Below: Sam and I at a wedding rehearsal- Aug 2012

My friend Cam and I at a wedding in June.
Left-Right: Dr. Mac, Me, Dr. Chira, Dr. Gunson
These are the doctor's who are brought me to where I am today! Thank you so much for all of your support, knowledge, and teamwork, without you I would not be where I am today!

To those of you just starting out on the jaw surgery trip...hold on tight! It can be a frustrating and exhausting process, but it was one that improved my quality of life in a way that nothing else could. There is nothing that can replace the ability to chew your food, and smile with confidence. 

 Smile On Jaw Buddies!

Friday, November 4, 2011

2 Years Post-Op Update

Here I am, 2 years post-op and smiling on! Last year at this point I had some PTSD of sorts from the anxiety of my surgery. This year I am celebrating my 2 year anniversary, but I didn't have any anxiety! Yay!  

I am still so happy I had the surgery, and my life is forever better for it. I recently saw Dr. Gunson here on the east coast for a visit, and he continues to be pleased with my recovery.

In the past year I was finally able to get a classroom of my own! I have 16 amazing Kindergarten students, and I could not love it any more! It is truly my dream job, and I went through at lot to get where I am.

I'm not sure of my current ROM (range of motion), but it isn't even a concern for me. I eat apples at least 3 times a week, and I don't usually have to choose foods that are really soft. I do have days where my jaw is more sore because of stress. I am still working with my physical therapist on neck and shoulder tension related to how my body holds stress, and the way my body was just built. My muscles just don't work like the average person.

Nerves: The nerves in my lower lip only twitch when I am really exhausted or stressed. Just two weekends ago I was getting feeling back in the tip of my nose! It was so cool! I still don't have full feeling in my chin and bottom lip, but the feeling has become my norm. If I get feeling back in those places, cool. If not, I'm not going to be upset about it. 

Swelling: I still have days where my face puffs up a bit when I have chewed or talked too much, but it goes down when I get a good nights rest.

Plate and Screws: I still feel vibrations when at a concert where there is feedback from the amplifiers, so I try to stay away from concerts with a lot of feedback. Whenever I have a cold the screws near my nose get a little sore, but it goes away when my cold goes away.

I have to give a shout out to my friend Lindsay who had the same jaw surgery this year with Dr. Gunson. She had a much easier recovery than myself. If you are preparing for jaw surgery, or in recovery, please remember that everyone has a different recovery. 

Meeting this 2 year mark, and still making progress, makes me feel very happy about my surgery and everything that has happened since. Below you can find a few pictures of me living my life sans jaw drama! 

Official School Photo 2011-2012

Sam & I at one of the Red Sox games we went to this summer!

Me with my nieces! I love spending time with them (and having energy to do it)!

Tonight Sam is taking me to the same fancy Italian restaurant he went to last year for my 1 year anniversary...yum, yum!! 

Thank you so much for the support over the last 6 years! It was a long road, but so worth it! 

Smile On Jaw Buddies!

Thursday, November 4, 2010

1 Year Post-Op!

Day 365 Days Post-op - 11.4.2010
This was the fortune I got the week before my surgery. I decided to keep it as my good luck charm.

Before and After Profile
Here I am, 1 year post-op and smiling on! It's hard to believe it has really been a whole year since surgery. In the last couple of weeks I have been getting those same feelings I had last year before surgery (stress, anxiety, fear, etc). PTSD of sorts perhaps? I am so incredibly glad that I do not have to mentally and physically prepare myself for such an intense surgery this year! It was 100% worth it, but as my other post-op jaw buddies know, it is very stressful!

Besides recovering from the enormous surgery over the past year, I have also been getting back into teaching! I could not be more happy or excited! :) I am currently a cooperating teaching a local kindergarten classroom. We have the greatest class, and it is great to finally be doing what I love! 

My ROM (range of motion) is at 35mm which is in the "normal" range. I can chew anything I want, BUT not all the time. I bit into an apple for the first time recently and it was incredible! It is not something I do often because it did leave my jaw muscles and joints sore for a day or so. Some days my joints are just tired and I choose to eat food that are less stressful, like yogurt instead of toast for breakfast.

Nerves: The nerves in my lower lip still twitch on a daily basis, but I now can control them enough to stop them. I do not have full feeling in my chin and lower lip, or my gums. The feeling in my gums comes back more and more every day.

Swelling: Gone. I think where I am now is where I'll stay. I still have days where my face puffs up a bit when I have chewed or talked too much, but it goes down within a day or so.

I am getting over a bad head and chest cold. My face was very angry from blowing my nose so often! I could feel the plates and screws vibrating. I used a nasal spray to try to limit my nose blowing time. My jaw joints were sore from coughing so much. I think these are things that will just become part of my "norm" as time goes on.

Plate and Screws: In general I do not notice them. I can feel them if I touch my face, but they say you have a greater risk of infection if you poke at them, so I leave them alone. On very cold days (40deg. or below) my face tends to be quite sensitive in the areas where the plates and screws are. If I go to a concert where there is feedback from the amplifiers then my face tends to feel it, so I try to stay away from concerts with a lot of feedback.

My current doctors visits (Rheumatologist & Genetic Specialists)  have been discussing the hyper mobility and pain in ALL of my joints. We have ruled out rheumatoid arthritis and are exploring my family history of Marfan Syndrome (a connective tissue disorder). It is possible that I fit into a category of people who have unexplainable joint pain and hyper mobility. This is frustrating to me, but I am glad we are exploring ways to help the pain. I still see a physical therapist once a week to help all of my body with the joint pain. I see my osteopath about once every 3 weeks to help in the healing process from surgery.

On Sunday I fly with my Mom to Santa Barbara for my one year post-op appointment with Dr. Gunson's office on Monday. I am excited to go back to Santa Barbara and get away from the chilly weather here in the Northeast. Dr. Gunson (surgeon), Dr. Mac (periodontist), and Dr. Chira (orthodontist) are all at a conference today and tomorrow to discuss my case and make sure everything is in great shape and no more work needs to be done. I anticipate still needing some work done on my back teeth as they are still a bit worn down, but we'll see what they say.

I am ecstatic to have hit the one year mark! I have come a long way in the last 12 months. I feel I am still making progress.

Here are some pictures from when I was in the hospital- 11.4-11.5 2009

11.4.2009 1 hr. before surgery. Texting Sam & Listening to Mix CD's he made me :)

Blood Circulation Tights and Fall Risk & ID Bands

Pep Talk from Dr. Gunson minutes before surgery.

11.4.2009 After coming out of recovery several hours post-op.


11. 4. 2009 Please note the container with blood on the right...that was what I was coughing up. Awesome.

11.4.2009 In a morphine coma.

11.5.2009 Waiting for Dr. Gunson or partner Dr. Arnett to come look at me.

11.5.2009 Dr. Arnett came to "clean me up" in the morning. I left the hospital in the afternoon.

Below are pictures of my progress through the last year:

Nov. 2 2009- 2 Days Pre-Op

11.7.2009 - Day 3 Post-Op

11.21.2009 - Day 17 Post-Op
12.22.2009 - Day 48 Post-Op
4. 19. 2010 - Day 166
September 2010 - Official School Photo

I'm not going to say this is going to be my "last" blog post because I will always be here to answer questions, and use the blog to vent about any future jaw news. However, I am no longer going to worry about blogging or feel guilty about not posting :)

To all  jaw buddies- if you have an questions or need support please don't hesitate to ask! This is such a huge process, and much too overwhelming to go through on your own.

Thank you to all of my family and friends for your support. I could not have gotten through this without you! THANK YOU!

Tonight Sam is taking me out to dinner for my one year jaw surgery celebration! He is the greatest! We are going to a fancy local Italian restaurant I have always wanted to go to, but have never had the occasion. I am going to gnaw on so much yummy Italian food, and I cannot wait!

A Smile Connects Us You and Me! Smiling On!