Greetings Cancer Chat Group.  In April of this year I had a full glossectomy.  They found a patch of squamous cell carcinoma under my tongue.  The tip of my tongue was reconstructed with muscle from my forearm.  When pathology examined my lymph nodes that were removed from my neck, they discovered two nodes infected.  As a precaution, they sent me for six weeks of chemo and radiation starting in June.

I am seven months past my surgery and my follow-up CT scan came back clean.  Recovery is slow and I have had to make several adjustments.  Some may be temporary and some may not.  My saliva glands have not recovered yet.  Also, I have no feeling in my new tongue yet so I am unable to chew.  My tongue does not know where the food is in my mouth to move it around as I chew.  Also, the tongue can't push the food to the back of my mouth to swallow.  My work-around is to purée all my food in a blender and drink it as a thick shake.

The problem I have been experiencing is my tongue swells up after I have been eating or talking.  It takes quite a while for the swelling to come down, but in the meantime, it's like talking with a ping pong ball in my mouth making it difficult to understand my speech.  What I think is happening is my tongue rubs on the back of my lower front teeth causing irritation. The reaction is swelling.

Has anyone else ever experienced something like this?  My surgeon told me back in April it would take 6 - 8 months for the swelling to go down, and that my reconstructed tongue would lose about 30% of its mass.  That's why they made it larger.  At the time, we did not know I would be going for radiation so that just complicated the length of the recovery.

Is anyone able to offer some insight?

Thank you

Rob