I have had a swollen tongue since I had rheumatic fever at age 5 to 6. It only tended to swell when I was getting sick. Instead of swollen glands like everyone else my tongue would swell. Around 2003 it started to stay swollen all the time and very painful. I had trouble eating and swallowing. Went to numerous doctors and ENT's and became a guinea pig. An ENT figured part of it on the right side was a mass on top of right side that contributed to the swelling. He removed part of the mass in 05 and I do not ever want to deal with that type of pain again. It was very tramatic. After about 3 months it still had not healed and I had a big black hole in my tongue. I finally went to see an Endo at Baylor Hospital and she told me he had misdiagnosed me. I never got the results from the biopsy. She put me on a diff cocktail of meds and sure enough the inflammation and swelling subsided. I cannot remember her name. Now here it is 2010 and it has started swelling internally again and the mass looks and fills like it is growing back. Has anyone experienced this before or has anyone even heard of this happening to anyone you know? I am so frustrated and do not want to be a guinea pig again. Help please.