OP "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | As my signature says I have had on going problems (5 operations) to fix the problem between the flap and the tongue. The first one included liposuction to reduce some of the bulk but 2 years on it is still rather bulky. The subsequent operations were to remove rough, white, raggedy edge between the 2. Also in between have tried the silver nitrate sticks with no luck. These operations were all done under general with between 5-6 stiches each time and I might add they were done by 4 different plastic surgeons on the same team. It was recently explained that this is caused by the tongue/flap passing over the remaining front bottom teeth when I talk. This was by the surgeon who did the last and will do the next operation on the 29th January 2009. I also feel I suck on the area especially when under stress.
Summarised below are the rather unsatisfactory events at my recent 2 year check in September 08. 1. The H&N surgeon who performed the initial op. was walking out 5 minutes before I thought I was going to meet with him. When I asked he said he was on his way out and one of the others could look at me. 2. During previous posts I mentioned that through this whole process I had not had a Pet/CT or MRI. Was advised by some of the OCF family here to insist but that did not work. The (I think) H&N surgeon who did come in next to see me did most of the talking as to why it was not necessary and I could not get much of a word in. In fact he was about to leave the room when I pointed out he had not even had a look/feel of my neck/mouth as this was supposed to be a 2 year check!!. 3. A Plastic Surgeon (did the initial operation) came in to the room to look at what is again the same problem but told me there was nothing more that could be done.
I was rather depressed with this 2 year visit and have not posted it here as yet.
In any case I went to the plastic surgeon that did the last operation in his private rooms a few weeks later. He was very sympathetic and his concern was that the constant irritation on the edge of the tongue (flap join) could in itself lead to cancer. He thought we could try another operation where he would take a section of tissue from the inside of my cheek and graft it over the problem area to form a sort of barrier. I was just so happy to hear that there were still options that could be tried at the time. That was around 3 months ago and now that the time is getting closer was wondering if anyone else had had this done or had any comments. Tried to keep this is short as possible but if you need me to clarify anything please let me know.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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