| Joined: Aug 2015 Posts: 22 Member | OP Member Joined: Aug 2015 Posts: 22 | I received my newly constructed tongue on September 29th. Because the left side floor of my mouth was also removed and the flap was used to fix that as well. I have around 4-5 teeth on that side of my mouth. My flap was sewn over my teeth on that side. I tend to clinch my teeth in my sleep (a long time habit) and have been biting this flap at night. The doctor casually said that if I bite through it no problem it will heal. I couldn't imagine what he said. The one thing I don't want to do is to eat this thing. What should I do? I was sent to a doctor for a bite guard but they don't accept insurance for it and it's around $1200. So right now I am using the type football players use $6 and works great. The problem is that I had already chewed it so much, little pieces are starting to come off, gross. Has anyone else experienced this. Help! Should I ask for additional surgery because in addition to the biting my trapped teeth are beginning to become irritated and now having pain. I appreciate any advice.
6/23/15 DX SCC left lateral tongue and dysplasia floor of mouth Surgery in October procedure: partial glossectomy, dissection L floor of mouth and neck No RT or Chemo Radial flap reconstruction
| | | | Joined: Aug 2015 Posts: 22 Member | OP Member Joined: Aug 2015 Posts: 22 |
6/23/15 DX SCC left lateral tongue and dysplasia floor of mouth Surgery in October procedure: partial glossectomy, dissection L floor of mouth and neck No RT or Chemo Radial flap reconstruction
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Corlis, Im very sorry you have not received any replies to your question. It made me feel so bad when I read your reply. I did see it but I did not have experience with going thru a tongue graph so I thought it best not to give you something other than first hand information. I hoped someone with a tongue graph could have provided some guidance. Dont give up yet, Im sure someone who has gone thru this will see your post and reply.
If I would attempt a guess at your situation it would be to stock up on the cheap mouthguards and use them. Maybe there is another more durable one out there?
Wishing you all the best. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Corlis,
I had 4 surgeries on my tongue, but never had a free flap. My tongue was very swollen after each surgery, but did eventually return to normal size.
I've had a few mouth guards made over the past few years, but none were that expensive. I paid around $300. If you have dental insurance, that may pay for part of the cost. Some of the mouth guards I had made were very rigid and more expensive, and another one was flexible, cheaper (around $100) and made in the dentist's office. I switched from a general dentist to a prosthodontist post RT - they specilize in oral devices.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Corliss, I stopped biting my flap when it reduced in size a couple of weeks after surgery. I would be very distressed if I was traumatising it. Doctors do seem to think it's no problem in those early weeks at least but if it's long term, don't put up with it. Can you make a forcible suggestion to your ENT that this is causing your anxiety and is just not right. From what I've heard on here, the flap can be debulked or teeth can be removed or treated in such a way they don't bite through. I know the mouth guards stop you biting on it at night but if it's already damaged and you are worried about it, see someone. My strong feeling is that you shouldn't have to put up with this.
Hope you find a solution.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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