Thoughts post-op: my jaw tumor experience
I drafted this blog on September 14th of 2015. I was finally healing from my reconstuctive jaw surgery — the removal of a Keratocyst Orthodontic Tumor in my lower left jaw bone. I forgot all about this blog. Now, it is February 27th of 2017. It is 2 years after I was first diagnosed. I wanted to share my journey, in hopes that others who go through this odd experience find some comfort in knowing they are definitely not alone, but most importantly, this is just a SMALL chapter in their life experience. It gets better, and soon, this scary time will feel very far away. Here’s my post-surgery reflection:
I am still trying to wrap my head around how eerie it is… I had this giant mass growing inside my face for maybe half my life. I’m 23. No one had ever spotted it before. Why is this my story, my chain of events? What could have gone differently? How do I get through this with grace and acceptance?
My journey with keratocyst.
Facing my fears of the hospital, IVs, blood work, surgery, and a new face.
First week of February 2015. Just another dentist appointment. I had a missing filling. A month earlier, I decided to floss, which wasn’t honestly part of my daily hygiene regimen. What compelled me to do it, I don’t know. But if I hadn’t, it may have taken longer for my keratocyst to be discovered. I met my oral surgeon, thinking nothing of the large shadow in my x-ray. I was told, even before my biopsy that the solution was a partial lower mandible resection. I proceeded to cry, more so because I knew I would need an IV, and was terrified. I think back and laugh at how niave I was in that moment.
Fast forward … I’m just going through the motions. I get the biopsy. I get 3 teeth pulled. I get a 4th removed based on my surgeon’s reevaluation of the size of the cyst. In the middle of all this, my dad gets into a terrible accident at work and is in ICU in New York. I spend most of my days off work the next 2 months driving back and forth to spend time with him and my family by his bedside, and at the physical rehab facility. It was an extremely stressful time, and very emotional for me. I felt guilty that I was away from my dad, and not there to help keep my mom company through the ordeal. All while dealing with my own fun mouth infections, and working overtime.
March 2015
Losing 4 teeth didn’t really bother me. You can barely notice the little shadow on the right back lower side there. This was when I was totally healed, and my swelling was down.
It took a while for my surgeon to consult other surgeons, research a custom prosthetic and get that in motion, deal with my insurance company (or just the confusion Massachusetts offices have with New York State insurance), treat my random infections throughout…
When I finally had a surgery date to count down to, it felt SO far away. Instead of being relieved when I got my date, I cried. Complete frustration. I tried to just make the most of my time, and planned a new family beach vacation for the week before surgery.
August 11th, 2015.
My beautiful arch bars. They really did not hurt as much as I anticipated! Although, I don’t remember much from being sedated, and sleeping for hours afterwards. (Xanax also helped!)
Post-op
I woke up extremely exhausted from the 8-hour surgery.
Surgery was supposed to be around 6 hours, but it took 8. My doctor apologized for scaring my mom and boyfriend but assured them it went “flawlessly”. He was extremely pleased.
I tried to prepare for the worst … so when I saw that I looked like myself, I was shocked. I didn’t realize the swelling would take time.
What I could not prepare for, was the loss of feeling on the operation-side of my face. Still now, I am numb on my bottom half of my lip, that side of my chin, and into my cheek. I am very much adjusted to it now, but it was shocking at first.
Feeling may return with time, as the nerves grow and “wake up”.
This was probably the peak of my swelling. What I didn’t know is that complications would follow, and swelling remained unchanged for days.
Pretty gross, but I wanted to share how large the area was!
My mom decided to take me back to New York (I’m a Long Island native!) for some TLC. Well, 2 days after discharge my swelling had not changed. I also began to taste something nasty in my mouth. I had a couple of infections post-biopsy and teeth extraction, so I knew the taste well. I called my surgeon, and my mom and I drove back to Boston the next day.
Hospital stay #2
Unfortunately, my doctor took one look at me and knew I had to be readmitted. Back to Newton Wellesley I went. I sort of expected it. I believed IV antibiotics would be necessary.
That night, they put me under and drained my infection. I had 2 tubes put under my chin.
My stitches were out and healing well.
Feeling optimistic!
I was able to leave once I was seen by infectious disease, as well as a hematology doctor. During my stay, they realized that I am severly anemic. Just another twist to add to my story.
My infectious disease doctor was incredible. He examined the results of the cultures — which appeared to be a strep bacteria. He assumes I was infected during my operation, which no matter how many precautions they take, can happen. I was prescribed 2 antibiotics, which he explained how they are protective over one another (I shouldn’t get yeast infections, etc.) and how to use probiotics to protect my gut over the next 3–4 month long course.
I was healing very well. A lot was going on — my boyfriend, friends and I moved apartments, I was adjusting to a new diet of soft and liquid foods, while taking heavy antibiotics.
I had to keep gauze on the drain holes until they closed. After that, I could finally shower and wash my face like a normal human!
I planned to return to work September 13th.
I decided to stay in New York for a week after the wedding, for some family time. It was boring in Boston — my roommates work full time and there was only so much unpacking and hanging of frames in our new apartment that I could stand alone.
A few days later, I noticed a puffy area on the side of my face, along my stitches. I thought it was maybe a pimple, or clogged pore, and decided to do hot compresses.
A few hours later, the area opened up and starting oozing yellow/green pus. I was horrified, and really worried. Once again, I called my doctor and it was back to Boston.
My surgeon had his own personal upcoming surgery, so when I went to see him, he immediately referred me to another surgeon whom he trusted very much. I was already set to see this new doctor for check-ups in my surgeon’s absence. I went right to Boston Medical Center, feeling totally numb and in disbelief.
I met a new doctor, and a new team. I felt at ease with my care, but in disbelief that with all my antibiotics for week, it seemed the infection was so bad, it was finding a way out of my body no matter what. Hence, the oozing.
It seemed the bone graft was the source of the infection, and my new doctor told me he wanted to drain the infection, go in and irrigate the area, and remove the bone graft.
This could not have been anticipated.
Hospital stay #3
The drain making an appearance. I felt fine the entire hospital stay, I didn’t even need painkillers other than an occasional Tylenol.
I did not FEEL sick. That is why this was so shocking.
I honestly have a higher pain tolerance than I ever knew!
Out of my johnny and ready to get the heck out of the hospital for the 3rd time.
Now, it’s September 14th, 2015. I am out of the hospital, on new antibiotics, and missing the bone graft. I have to keep gauze on again until the drain holes close. I am going to seek a second opinion about the antiobiotic regimen from my original infectious disease doctor, as I truly trust his expertise.
I have a follow-up appointment on Friday and will know what my new surgeon thinks about my healing, and moving forward. There is talk of a 4th procedure down the road, where I get the bone graft replaced. If the only reason I need it is to be able to get implants, I honestly couldn’t care less. At this point, teeth are nothing to me.
