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The Saga of Neverending Jaw Pain

April 17, 2012

The blogging has come to a halt over the past two months and not for lack of material, just lack of energy and inspiration to sit down and write. Now, as the weather gets warmer, the only thing I want to do is spend my time off outside for every second possible. Earlier, as I was sitting, zoning out at the lake I heard my inner voice practically telling me word for word what to write for my next entry. I had to rush to the nearest cafe with my laptop to begin promptly writing. And here I am.

I’m shocked I never thought to write of this sooner, but feel it is so relevant to what I do every day as a nurse that now is as good a time as any. Many of you are aware I had a pretty intense, 7-hour long jaw surgery exactly 2- years ago. The goal of surgery was to improve my breathing and chronic jaw pain by improving my bite/jaw structure. This was accomplished by removing my turbinates, surgically breaking the upper and lower jaws and rebuilding them by securing metal plates inside my chin, maxilla, and mandibular bones. I knew for 4-years I would need this surgery, but put it off for as long as possible because I would have to wear braces for a year leading up to the surgery, and let’s face it being a 20 something and braces are not a good combination. After having had a second opinion and 4-years of “should I’s and shouldn’t I get the surgery” I decided to get the surgery. After-all my surgeon in his own medical terms,  put the fear into me that if I didn’t have the surgery I would forever be in chronic pain and my jaw would look “funny” one day.

Nothing could have prepared me for what I was in for. During surgery I was intubated, had an NG tube, and foley–pretty standard as far as surgeries go, but for a 20 something not finished with nursing school, this was truly upsetting and terrifying. Post-surgery I stayed in the hospital for 4-days until I could sufficiently take in enough calories and had adequate pain control. Those 4-days were terrifying and a blur. I recall my head throbbing, my throat on fire from being intubated, my nostril chaffing and the bizarre feeling in the top of my throat when my Uvula would rub against the NG tube. I remember having the most intense cravings for salt and the fruity smell of the tube feeds.  I’ll never forget the first look in the mirror at my face that had swollen to 3X the size (no exaggeration) and bursting into tears of shock because I did not recognize myself. Those of you who have had wisdom teeth removed, think much, much bigger! I remember a night nurse coming into my room stating, “I’m going to hook up some suction just in case you know, you start choking on your tube feeds and I need to suction you out.” This statement kept me awake all night…and every hum and beep the tube feed machine made I wanted to freak out.

I remember feeling like I should be tough because after-all I was a nursing student, I could handle this stuff, but a huge part of me was so terrified and in so much pain all I wanted was my mother every minute of every night, fortunately they let her stay at my bedside all hours of the day/night, because had they not I may have had some sort of emotional breakdown. I was not myself those 4-days and I felt like I was out of my body looking down at my swollen, pain-ridden face the whole time. I’m telling you, it doesn’t matter how old you are, or how tough one is. When you have a big surgery, and are in pain, one often reverts to a younger age and I see this in my patients on a daily basis.

After those 4-days slowly went by, I was discharged home on a liquid diet for 6-8 weeks. Chewing was not a possibility. I remember having the biggest cravings for italian food, steak, cheeseburgers and salt. Anyway, to spare you every detail, I healed nicely. 8-weeks went by pretty quickly, the swelling came down quite a bit,  my follow-up appointments went well, and I gradually was able to eat more and more foods. Fast forward to 7 -months post-surgery I began having severe pain in both  tempomandibular joints (the two parts of my jaw the surgeon did not surgically open or mess with). When I called my surgeon to tell him about the pain, his response was, “Well you’re apt to be in some pain following such a big surgery. Your surgery was like a marathon, and you’re going to be sore.” I felt as though he punched me in the gut. As the pain increased and never went away I learned to live with it. I felt defeated, missed classes senior year due to being in so much pain and worst of all felt that the horrid surgery I went through was all a huge mistake. After a few more similar phone calls to the surgeon where he would claim, “just take some ibuprofen, you’ll feel better” I decided I would never contact him again and that something must be terribly wrong inside my jaw.

In a fit of desperation, I began seeing my orthodontist who so valiantly tried to help figure out the cause of my now, worse than prior to surgery pain. After many, many visits over the past 2-years with no reduction in my pain, I was referred to a jaw pain specialist. This doctor is brilliant…and did many scans which reveal I have many bone spurs and scar tissue inside my bilateral jaw joints as well as a slipped disc. There is no way to prove if this is from my surgery, but in my heart I feel it is since I never had this severe pain before the surgery. In the future I can look forward to physical therapy, a mouth orthodic (not sure how I feel about that one…), some arthroscopy and potentially a disc replacement further down the road, but it feels good to be listened to and taken seriously. This doctor was appalled that my surgeon didn’t feel it was necessary to see me after having such an extensive surgery. To quote the new doctor he said, “I’m surprised you’re not in more pain and are able to eat any foods at all with the damage inside your joints right now.”

If you’re still reading this saga, I can tell you the only good things that came out of my having this surgery is that I am actually able to breathe much better with my turbinates removed, and the experience has made me a more insightful nurse. Since I will never forget the feeling of having tubes invading my body, I am more sensitive to what my patients must be going through.

Perhaps the biggest lesson I learned from all of this, don’t just get a 2nd opinion if you’re told you need surgery. Get a 3rd or 4th opinion. Don’t assume because a surgeon has won many awards and published many articles that he will be the best surgeon to perform your surgery, because it’s possible, that like mine, his bedside manner will suck. If I could go back in time, I would have never gotten this surgery. Since I can’t go back and can only move forward I am in the process of writing the surgeon a letter explaining what I went through and the conclusion of the cause of my pain 2-years later. I don’t believe he made a mistake in performing my surgery, but I feel he recommended  a surgery I didn’t need. He also should have known to refer me to an appropriate doctor when my pain was getting worse. As my current doctor puts it, “it seems as though no one explored that your pain stemmed from the jaw joints and wasn’t related to structure of your bones” in which case the surgery I had wouldn’t fix the pain I had prior to surgery.

All in all, this was a huge learning experience and I will continue to share this story with others and try to turn a positive spin on it. I am hoping that I won’t have pain every day and that I can one day eat an apple without cringing with pain.

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4 Comments leave one →
  1. Robert Smith permalink
    April 17, 2012 9:37 pm

    Wow! So much in your latest blog, Lili. You are a great writer. Sorry for the hurting. Hope the writing helps you. Suffering sucks. Your courage is remarkable. Love you, U. Bob

  2. Elyn permalink
    April 17, 2012 10:30 pm

    Love it, love it, love it. Your ability to accurately tell this nightmarish story and the your ability to put a positive spin on it are nothing short of miraculous. I think you should send it to all orthodontist and doctor who performed the surgery. They could learn from this.

  3. Leanne permalink
    April 17, 2012 10:39 pm

    I’m sorry you’ve gone through all this crap–and without actual medical need for it. I hope the Doctor reads your letter and learns something from it.

    • Rosalie permalink
      April 25, 2012 1:06 pm

      Great article…..great writing style. I look forward to next entry.

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