Lump on underside of tip of tongue - please help

[maxuhs]

20 years ago, I had a mucocele removed from the underside of my tongue at the base, NOT the tip.  Since then, I have had some numbness on the TOP of the tip of my tongue on the left side.  Nothing major, but it was a change for me.  No big deal; learned to deal with it.  Fast forward twenty YEARS!  6-months ago, I started to experience pain in my tongue TIP.  It was stiff and I noticed I had a small lump on the UNDERSIDE of the TIP of my tongue on the LEFT side only when I flexed my tongue.  If I left it perfectly still, and limp, there was no lump.  But, if I move it even slightly, it pops out.  If you look at my tongue, it's not symmetrical at all.   It started to impact my ability to speak clearly and the area gets very stiff when I talk a lot.  To the point it feels like a Charlie horse.  Hurts!  

Over the last 6-months, I saw several ENT's, an oral surgeon, my dentist and finally a head ENT at the Cleveland Clinic.  I had blood work done and a CT scan.  All surmise it's not cancer.  But, none really know what to say.  I'm in speech therapy now learning to stretch my tongue as the head ENT at the clinic thinks is scar tissue.  I'm not so sure as that surgery was at the back of my tongue and I can feel that band in my tongue back in that area - it's hard and grainy.  It's a long way from this new lump.  Also, that lump isn't hard and grainy one bit.  It's soft, pliable and almost moves around like a balloon in my tongue if I twist my tongue around.  So very odd, I know.  

If the stretching doesn't help, he suggested trying Botox into the lump and then steroids if that doesn't help.  I'm not comfortable with Botox from what I have read.  The side effects appear much worse - any thoughts there?  How about the steroids?  The thought is that it's a tense muscle and they want to try and relax it - assuming it's not scar tissue.  I can't imagine it is scar tissue as the bump/lump is soft and pliable.  

I have also recently tried acupuncture.  Too my surprise, it did loosen my tongue pain/tension in that area up quite a bit.  But, it did come back in a week.  It was never perfect, but better.  Also, that lump never went away - the tension around/in it is what changed.    

I speak for a living and this is really starting to impact my quality of life.  I'm afraid to talk because the tension at that bump area builds up to the point it feels like someone has put a clothes pin on the tip of my tongue.  I can feel it coming on when I am speaking and have to cut my conversation short as the tension and pain nearly freezes my tongue and it won't move.    

I'm lost and not sure what to do next.  I would greatly appreciate any input - it's causing me a lot of grief.

Thank you!

[scottma]

5mlAloe Vera gel topically applied to the affected area twice a day, 30ml aloe Vera juice rinse and drink twice a day is the regimen recommmended to treat submucosal fibrosis, which is similar to scar tissue.you may google submucosal fibrosis ,and above regimen was published in an article related to oral pathology or oral medicine.

[maxuhs]

Thank you for your reply.  I will be trying this.  I did read on the submucosal topic - I don’t believe that’s what I have but the relation to scar tissue seems similar.  That area where the lump is changes at times.  Some times it actually feels like it moves around at the tip of my tongue.  Other times, like today, it feels very inflamed and larger than it looks in the mirror.  

I just struggle to understand how it could be scar tissue that far from the original surgery site.  Also, why now after 20 years?

Thanks again!