Rim resection of mandible , neck dissection....what to expect now

Good evening LadyLee, this sounds a bit like my first cancer where i had an ulcer on my gum that would not go away, and like you, i had a neck dissection and surgery to remove the cancer with a forearm flap to repair the damaged area, my cancer was classed as "the floor of the mouth " where the flap and veins were used to repair the hole. I never regained much feeling to the underside of the chin but the rest of the feelings you mentioned did return after about 3 to 4 months once the nerves and muscles recovered, you might have to see a speech and language therapist (SLT) as they will give exercises for your tongue and mouth. Yes if you have no feeling then it's very hard to eat as you have no control, i think there is a tool called a therabite you can get from your SLP which is a device that helps to open the mouth wider over a period of time. I personally think you will be ok it's just a matter of time. If you click on my profile photo it will take you to my story with oral cancer. You will get there in the end, i promise. Wishing you all the best, take care .

                                                                                                 Chris x

Hi LadyLee

I had a right partial mandibulectomy  for what looked like a white spot on my lower right gum 7 years ago which turned out to be a squamous cell cancer.  I had all the teeth and most of my gum removed on the lower right side and also a neck dissection then had 6 weeks radiotherapy.

After recovery I was able to eat fairly well as I could use the teeth on the other side of my mouth still.

I do continue to have some altered sensation on the right side of my face from below my ear down my neck and also on my face from my cheek down to my lower right lip. However it has improved quite a lot over the years and is nowhere as bad as it used to be. You do eventually get used to it.

I also had a reduction in the ability to open my mouth. It is called trismus.  I was told to do an exercise using pop sticks putting them between your teeth and gradually building them up as you are able to get as much opening as possible. Apparently normal mouth opening is 3 fingers on their side wide so you can try and build up to that.

There is an exercise machine called a Therabite but they are quite expensive. They are not readily prescribed in Australia where I live but someone on the forum once told me that they got theirs provided through their cancer team so it might be different in the U.K.

I found the exercise with the pop sticks worked quite well although I was never able to open my mouth quite as wide as before.

Best of luck as things do eventually improve although things are not quite the same as before.

You are lucky to have found this forum as I only found it recently after my second mouth cancer. I went it alone the first time around and found it quite hard. I am lucky this time as I have now found this forum  and everyone  have been so encouraging and helpful that it has not been nearly so hard.

Lyn

Hi LadyLee

I had a partial neck dissection 8 years ago and they warned me that I would lose all the feeling in my ear lobe. I wonder why they focused on this as that was really no big deal whereas the total loss of feeling in my shoulder and side of my face was much more problematic ! In retrospect I wish I has spent more time massaging the scar tissue in my neck  as I now still have a very stiff/hard neck which I could have improved but it was quite painful to do at the time. It is now much better but I still do 10 minutes of shoulder exercises every morning and I pay for it if I miss a session. Having said that I still ride a motorcycle, the feeling has mainly returned to my face and it's all fine. Ask about physio and at least get some exercises and do them if you have not already been given them would be my advice to myself !

JonH

Hi LadyLee

I can talk about the neck dissection as I had 2 of them.  Almost a year down the road and I think it has settled down to a steady state. 

Definitely massage something like E45 cream into the scar.  That does two things; it get you used to feeling that area so you know what it is like and if there are any changes and it helps the scar tissue settle down.  You can barely see where they went into my neck - 2 very skilful surgeons!

Like has already been described the cutting and damage to "skin sensory nerves" leaves the neck, ear and in my case front of the chest/shoulder feeling strange.  That is probably not going away any too soon (when I was 17 I broke a femur and the operation did similar things to the feeling in my leg; 45 years later it is no better).  It may change over time but I have got used to it and in my case it is not too much discomfort.

You may also have lost some muscle control in your shoulder.  I can, very strangely, pick up a bag of cement without trouble, but cannot reach out for a cup of tea at arms length and pick it up! 

Physio can most definitely help with any muscle issues.  They may not get you back to where you were before, but it will improve and you will get coping strategies.

7 weeks is really quite soon for such major surgery.  Take it day by day.  Keep a diary of what works and what does not so you can see trends and discuss with your clinical team/GP.  I don't think any of us ever stop being concerned about changes to our bodies.

Step by step you will get on top of the issues and get to a good quality of life.

Hi LadyLee and welcome.

I too had a neck dissection resulting in one half of my face, lip, tongue, ear, neck and shoulder area being totally numb.  The nerve damage also affected the use of my shoulder and arm for which I had physio for months.  The good news is that as the nerves repair themselves much of the feeling should return although you may well have some areas which remain numb or partially so.  I'm now 27 months post treatment and still have numbness around the edge of my face, ear and down into my neck - it's nowhere near as bad as it was.

I would ask for a referral to the Speech and Language team as Chris suggested so they can help you with the issue of trismus.  Regular exercises done correctly should definitely help.

Good luck with everything.

Linda x

Oh my goodness , just read your profile and you have really had it rough, you sound so positive now though, it was one thing after another....sounds like it’s wait and see for me, but I will investigate the therabite, it’s been mentioned further down, thank you for the reply and I wish you well too x

Thank you, yes sounds similar to me, I will investigate the therabite, my consultant told me to put my finger in my mouth flat, then turn it sideways which is about as open as it goes...no chance of two let alone 3 fingers, but I’ll persevere . Yes, this site is helpful, hearing other people’s experiences helps, puts things in perspective too, best wishes x

Hi, well I’ll definitely do my exercises now, have seen the physio so have a list! Will massage my neck too if I can, it’s worth it if they work, thank you x

Hi, I had a tumour in my upper right roof of mouth and have had my right upper jaw and the roof of my mouth removed and have trismus.  I was given a Therabite by my team and have been using it for just over eight months now.  My mouth was only opening 9mm when I started and when I had to have a general anaesthetic for a second op to remove my surgical obturator (which is like a denture that replaces the roof of my mouth and jaw on the right side) I had to be intubated through the nose instead of the mouth.  I now have a mouth opening of 27mm and can get two fingers sideways in the opening.  It takes perseverance but you can make an improvement.  I'm now trying the popsicles as well as the Therabite to see if I can get an even wider opening. 

I have regular video meetings with a speech therapist who checks how I'm getting on with the mouth opening.  Don't know if this is what normally happens for people who've had maxillofacial surgery?  I'm in the UK.

Hopefully things will improve for you

Cheryl 

Thank you all, now I know do my exercises, massage the scar, keep positive that the feeling will come back, you are all very encouraging, thank you x