Jaw reconstruction /bite

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Hi…Anyone treated for SCC gum/Jaw? I feel like I post so many questions and I apologize in advance for more! Also a biig thanks to Dani who always points me in the right direction and all who respond!
I had a portion of my lower jaw taken and replaced with my fibula. The cancer was in the back by an impacted wisdom tooth. I also had 26 lymph nodes removed…everything was clear and clean margins.
Because it had invaded my jaw bone, 33 radiation treatments were recommended.
Initially after surgery my bite was way off as I had no overbite. I am 4 mos out from surgery, and 7 wks post radiation. I ended up with a feeding tube on the last day of radiation. I am trying to take in more calories by mouth and wean off of the tube feeds with foods that support healing.
My problems are that I have a limited menu and my teeth don’t quite line up still but it’s a big improvement. I am missing 2 back molars from surgery and my tongue is also swollen on the radiation side. I had some fish for the first time and chewing with pressure on my teeth, was a bit uncomfortable and it was a lot of work! I ended up eating half.
Has anyone gone through similar jaw surgery? Does the bite, alignment and chewing/eating improve? I feel like I still have swelling and i am working with a lympathic massage therapist which i think has helped.
Any advice or words from experience is appreciated!!

  • Hi Lola. It does take a bit of work after jaw surgery to get back to eating. Over time I have had a mandibulectomy (removal of part of my right lower jaw) and 2 maxillectomies so no upper jaw and 2 lots of radiotherapy over time.  Not a candidate for upper jaw reconstruction so instead had a titanium bracket fixed to implants into my cheek bones with a denture attached.

    Keep trying to eat different things as you don't know how things will progress. Start off with softer foods and then build on that. After my mandibulectomy I got back to fairly normal eating although the moister the food the better. You will get to know what you can manage over time. After my maxillectomies I tried different foods but for me have found that chewing is nearly non existent so unless pureed it goes around in my mouth and won't go down. However you are in a different place and over time will work out  what works for you. You might have to adapt to a different menu but I find that I still find food that is tasty and enjoyable.

    Lyn

    Sophie66

  • Thank you, Lyn!! I appreciate it. Wishing you continued healing.Two hearts

  • Hi Lola, over three years since I had fibula free flap jaw surgery but did not have radiotherapy, I had seven teeth removed on surgery side. Eating is still not a doddle I must admit but I manage most foods, cutting up dryer food into small pieces and eating along with the softer consistencies on the plate. So yes, my jaw alignment and chewing action has definitely improved but as we mostly all say, there is definitely a ‘new normal’ to accept. You will get there, just takes time.  
    June

  • Hi Lola. In relation to your limited menu. As my eating issues are long term I decided that I needed to make sure that I ate a healthy diet so I had the energy to do the things I love. I can highly recommend home made soups. I bought a book on soups and decided to work through most of them except the spicy ones as those I can't manage taste wise. You can thicken them up or water them down with more stock depending on how you are on the day. I also eat a lot of steamed veg mixed in with really soft meat such as the ones in Shepherd's pie and add in some natural yogurt for a bit of a zing. I find the bought ones are softer than those I tried to make myself so a bit of a cheat there although cooking for a long time in a stockpot can really soften meat.I also eat a lot of stewed fruit mixed in with weet bix or porridge and then add in yogurt or custard. Really soft boiled eggs work quite well and add in extra protein. Try and eat a bit of protein, a bit of fruit and veg daily and limit the sugar intake. I find that drinking 3 Fortisip a day helps me keep up the calories so I don't lose weight.

    Hope some of these suggestions help.

    Lyn

    Sophie66

  • Thank you, June! May I ask what your diagnosis was? Did you have SCC in the jaw? I can’t go back in time but I wonder sometimes if I should have gone through with the radiation.

  • Thank you so much for the helpful hints!! I am in the US and wondering about the fortisip!

  • Hi Lola

    yep, gum and jaw.  We all make our own decisions with regard to radiation, and all we can do, taking our individual situations into account, is hopefully make the right one. I am sure you made the right one for you, and well done.

    see my profile. All best wishes.  June x