Dear Friends

My Mum has been told she has a condition called Sub Mucous Fibrosis inside her cheeks. It is has started to restrict the opening of her mouth in that she can just about put one finger in her mouth. Mum's consultant says that it is a irreversible condition once it has started and the only thing to do is for Mum to do mouth opening exercises, which the speech therapist has shown her. He also alarmed us by telling her that there is a very high risk that it could become cancerous and therefore he needs to see Mum every 4/6 weeks to check on it.

Has anyone here on the board suffered with Sub Mucous Fibrosis? And would you please share your experience with us?

Thanks

Love and Prayers for you all.

Kathleen.

Carer of my Mum: Diagnosed with Tongue Cancer in November 2002, surgery to remove nearly all of tongue in January 2003 and also radical neck dissection to remove lymph nodes at same time.

Hi Kathleen,

I can only tell you about my experience after radiation. There is a condition called trismus that develops from radiation. I can not remember if your Mom had radiation or not.

I do have trismus and I am down to only getting one finger in my mouth. I am going to go back to physical therapy (someone that specializes in TMJ, since this is similar therapy) and hope they can get me back open to 2 fingers again. Noramlly a person should get 3 fingers in.
Ah! Radiation - the gift that keeps on giving.

Please do a search of the site, also the message board and you will find information about trismus.

Take care,
Dinah

I encourage your mother to do the exercises. I just saw a speech and swallowing specialist yesterday and she said that even though I am 2 years after treatment that its not too late for me to resume the exercises and make additional progress.