Hi everyone,

Has anyone out there had their tongue untethered or know of anyone who has? This is something I would like to pursue if it's possible.

Hal

Hello Hal,

This is something you should discuss with your ENT. Mine told me that since I had a near total glossectomy and the flap was tethered since I didn't have enough " real tongue" left at the root to enable it to move (i.e. control) if it were untethered.
So I'm guessing that the first issue is how much "real tongue" you have left. If there is enough left to be able to control a reconstructed flap, then it might be possible according to some postings I read.
I agree that tongue mobility is a BIG issue. I have to use a syringe to squirt juices and pastes to the back of my throat to swallow. After a year of therapy and 2 esophagus stretches I can swallow without aspirating but cannot control food in my mouth due to the tethered immobile flap. I got a palatal drop mouth prosthesis from a maxillofacial prosthodontist that helps somewhat.
I suggest you consult your ENT and possibly a maxillofacial oral surgeon to see if you might be able to have anything done.

Anyway, I wish you luck. I'd be interested what you come up with. I was told mine was out of the question by one of the top ENTs in the state.

Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies