Saturday, November 4, 2017

8 Years Post Op!




I cannot believe it's been 8 YEARS since jaw surgery! It has absolutely been both one of my greatest struggles and one of my greatest accomplishments.

Last year I posted that I'd been diagnosed with Ulcerative Colitis (UC) and Rheumatoid Arthritis (RA), and this year I add another auto-immune disease to the mix: Ankylosing spondylitis (AS) (pronounced ank-kih-low-sing spon-dill-eye-tiss). This is a form of arthritis that primarily affects the spine; however, Frequency of temporomandibular joint (TMJ) involvement in patients with ankylosing spondylitis (AS) has varied from 4% to 35% (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669964/). Because of my Marfan Syndrom that also causes so much joint pain and back pain, AS has essentially been "hidden in plain sight".

A few months ago I went to my dentist to have some work done and my jaw was very tired and sore for about three weeks. I knew I was pushing it having my mouth propped open for an hour...but I just wanted it to be over- I paid for it (pain, difficulty chewing). I really cannot be propped open for more than 15 min without a solid break. I took ibuprofen, Tylenol, ate a softer diet, and used heat to help my TMJ. Today it is feeling much better.

Now that I know about my AS and it's involvement with the TMJ, I know that I need to really take care of myself. And as part of taking care of myself started taking a TNF inhibitor/biologic. TNF inhibitors are a type of drug used worldwide to treat inflammatory conditions such as rheumatoid arthritis (RA), psoriatic arthritis, juvenile arthritis, inflammatory bowel disease (Crohn’s and ulcerative colitis), ankylosing spondylitis, and psoriasis. They reduce inflammation and stop disease progression by targeting an inflammation-causing substance called Tumor Necrosis Factor (TNF) (source: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/TNF-Inhibitors).

In April of this year, I started my first TNF inhibitor: Humira. My body didn't tolerate it very well. I had a constant fever, headaches, general "feel like I've been hit by a truck" feeling...and it wasn't helping my AS, UC, or RA. So next I tried out Cimzia my body tolerated Cimzia so much more! I hated the injections for both Cimzia and Humira- one was a pen style...which was nice because I couldn't see the needle, but was still painful when going in. Cimzia was a long needle, which I hated looking at, but it hurt less while I was injecting. About a month ago I had to stop Cimzia because my UC was once again not under control.  Last week I started going in for an infusion of another TNF-Inhibitor called Remicade. These infusions are done in a hospital setting in the chemo center. I had an allergic reation while there- was pumped full of benedryl and steroids and Remicade was added to my allergin list.

Where does that leave me now? Well, besides feeling like a lab rat...I start yet another TNF-Inhibitor (Simponi) next week. Hopefully, both my gut and my joints are happy on this med. I don't know what would come after this...although I have read some articles that say "hookworms" could be my cure....(https://www.nytimes.com/2016/06/19/magazine/the-parasite-underground.html). I do take supplements, etc. to try and help my gut stay intact through all of this.

All this to say, I am so glad my jaw is stable when I treat it well...and hope the rest of my body catches up! Lots of love & smiles - Mary

Saturday, November 5, 2016

7 Years Post-Op


HAPPY 7 YEAR "JAWVERSARY" TO ME!
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 Syndrome...my 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!


Mmmmmm....
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!