Stiffness after partial glossectomy and selective neck dissection

I had a similar operation and was given exercises for my tongue and mouth by the speech therapist before I left hospital.  It was stressed to me that I need to do these exercises every day. I now do them when I’m walking the dog, although try to not stick my tongue out when someone’s walking towards me! It’s over 10 months since then and I’ve now recovered to pre-op levels although my smile is still a little lopsided.

Exercises I do are repetitions of opening mouth as wide as possible and sticking tongue in different directions eg straight out, up, down, left, right and backwards. If you do a search online lots of examples come up. 

If you need more support try to get a referral to the speech therapist at your hospital.

Hi KitKat

The exercise I have to do for mouth opening is using tongue depressors or lolly sticks. You stack a few together and put front ways into your mouth and hold for 30 seconds and repeat 3 times. If this is reasonably comfortable you then put another depressor half way into the pile and put the stack into your mouth. You then push the one that is half way in the rest of the way and hold again for 30 seconds and repeat 3 times. You keep adding tongue depressors as you can tolerate. I have reduced mouth opening too as a result of my ops and can manage 10 tongue depressors before it starts getting uncomfortable. Normal mouth opening is as wide as 3 fingers side by side. My mouth opening is one finger wide. I have found that one finger wide is enough to get a spoon in and to be able to clean my teeth so if you can do more than that you are on a winner. There is also an exerciser called a Therabite which you can sometimes get through your hospital free of charge but is very expensive if you have to purchase privately. I asked my doctor about getting one and he said that the tongue depressor exercise is just as effective.

Best wishes with the exercises.

Lyn

KitiKat said:

Thankfully I got the news today that the cancer hasn't spread to any of the 30 lymph nodes that were removed.

It's still early days but my mouth, jaw and tongue are very stiff. I can't open my mouth properly which makes eating difficult and can't stick my tongue out at all. My smile is also lop sided.

Hi KitiKat 

I can't help with the exercises as mine were to prevent fibrosis after RT which is probably different but I just wanted to say that it's great you have no more  cancer. Hopefully that's the end of treatment.

I will echo Cath's advice. Get onto SLT and get some advice there. The quicker you start the fewer long term problems you'll have.

Hi pleased no spread. As others have said you need a referrals to the speech and language therapists. You should have been allocated a Macmillian or cancer nurse guve them a call. Bit remiss of consultant yesterday nit to do it ir give yiu more info sometimes i despair with our nhs.

Hazel x

Hi KiitiKat

I tried the sticks it was just too painful. I was given a Therabite machine by my speech therapist, it was amazing, I had to use it several times a day, still painful to start with but so much easier than the sticks. My mouth also was lopsided but it did improve. I can now get three fingers in my mouth even my dentist was pleased with the difference, you could ask to see if you could get this machine, I say machine it’s made of plastic 

I've had 2 dissections - the final similar to yours.  My partial glossectomy was abandoned so I can't offer advice on that.  For the dissections I had stiffness and limited shoulder movement.  My GP got me physio really quickly and that helped.  I also "massage" the dissection and shoulder area when showering using a massaging shower head as hot as I can stand it.  That really does help loosen up things.  Recovery from the dissection was slow after a quick initial recovery.  At around 18 months I slowly realised that many of the problems had receded so as not to significantly affect day to day life.

My partner also has the same problems you are having but he's getting better slowly and had he's surgery in May so early days yet and keep going you will get there. Sending you all my best xx

Thank you all so much for your help and advice. I'll definitely try the jaw exercises with the tongue depressors and I've found some You Tube exercise videos. I've got a telephone appointment with a speech therapist next week and I'll ask about whether I can have a Therabite machine. I was hoping to have had more support from the hospital with regards to rehabilitation but hopefully the speech therapist will be able to help.