Hello there. X

FormerMember
FormerMember
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I had squamous cell carcinoma of mouth in March of 2020. I was operated on in May. They did a bilateral segmental mandibulectomy. They took a graft from my fibula and all was well until a week later when the graft broke down so I had to go back to theatre to have it done again this time taking the free flap graft from my wrist. This time all was okay and I recovered. 
I had radiotherapy in July and August. I did find this difficult due to having to put a tight mask on for the radiotherapy. But the treatment went well and I started to recover.

I had various infections in my graft sites and neck. Antibiotics helped that. I’m not good at healing and when my neck flared up with yet another Infection I had to go back to theatre and they removed part of the metal plate they had put in. I thought that should sort things out but the wound wouldn’t heal and gradually it opened up to show bone. I went back to theatre in July 2021 where they removed the rest of the plate and I had a further free flap graft from my wrist. 

I'm now helping but have been left with a facial droop on my left side. I have coped reasonably well with all that has happened. But now I’m feeling quite down with how the facial droop looks. I find eating and drinking difficult due to my mouth not sealing properly. I wondered whether anyone had similar problems with eating and drinking and if they have any advice?  X

  • Hi Sulyn and welcome.  I am afraid that your surgery is not the same as I have had so I can't offer any advice.  I am sure someone will be along soon with similar experiences to you.

    It sounds like you have had a rough time of the treatment.  Hopefully time will be the great healer.  Certainly I have found time - 18 months+ - has seen a slow but distinct improvement in the after effects of my surgery.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Sulyn

    Sounds as though you have had a really rough time with your mandibulectomy. I also had one in 2013 but did not have the issues you are experiencing with eating.

    Have you had any advice from your surgeon about the difficulty with eating and the poor mouth seal and does he think a referral to a physiotherapist specializing in jaw cancer or even a speech pathologist would help? It must be so frustrating not being able to get a proper seal with your mouth and must make eating and drinking a really messy experience.

    Are you managing to eat enough and if not maybe advice from a dietician may help.

    Things often improve over time and if some professional help makes a difference that would be great.

    Best wishes for your recovery

    Lyn

    Sophie66

  • FormerMember
    FormerMember in reply to Sophie66

    Hi Lyn

    Thank you for your response.
    The head and neck team have been brilliant. I am under the care of speech therapist and the dietitian. 
    Unfortunately when they did the the last op they bruised or damaged the facial nerve. I hope there is something that can be done. I have been referred to the face place which I believe is physio and other related facial problems. But my appointment isn’t until November. So I have to be patient which is quite difficult for me! 

  • Hi Sulyn

    I am so glad you are getting all the professional help you need. November will be here in no time.

    In relation to the facial droop it may be something that improves by itself if the nerve is only bruised so fingers crossed.

    It does take a while to get used to a change in body image.

    I have a slight droop on the right side of my mouth from my mandibulectomy but I don’t have to look at myself too often so forget about it except when I put my lipstick on in the morning. It definitely takes different contours than it used to but I won’t go out without my lipstick even if it is a bit lopsided.

    I decided to celebrate it and take it as a sign of survival from cancer as hurray here I am still.

    Best wishes for your ongoing recovery

    Lyn

    Sophie66

  • In so far as any problem relates to bruising and damage which occurred in your recent July surgery, I would think that there is definitely hope that will improve gradually.

    It does sound as if you’ve had a rough time. My surgery for mouth cancer and rim mandibulectomy was less demanding, but I still have a lopsided mouth, particularly when speaking or eating. For me there has been gradual improvement since surgery 3 months ago, but it will never be quite the same again.

    I actually already had a noticeable facial scar from a previous surgery and I am accepting all these changes as part of who I now am, although it is a difficult adjustment.

    Scars carry on healing over 18 months to 2 years and even damaged nerves can slowly heal, so I think you can realistically hope for some improvement.

    Wishing you the best of luck in your recovery.