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.

Hello Gabe,
As always, so good to hear from you. So sorry you are having this problem. I can sort of understand because I constantly am
biting my cheek after having part of my lower jawbone removed. I asked my ENT if this could cause cancer(the constant irritation)
He said possible but very rare. I saw a dentist that finally tried to help me with a mouthquard I use at night. It has helped somewhat-actually more to have somebody understand. But honestly, it hurts or irritates all of the time, and I just try to get used to it.
But it does get to a point where you need to get things fixed, and get excited that someone will listen to you. I know what you mean when you say this surgeon gave you some real hope that
there is something to be done. I don't know exactly what you are going through but I am sure there is someone on hear who will. I do know about doctor's that don't see your sense of urgency and concern. My husband is constantly amazed at how my doctor's seem so"Out of touch with reality". No compassion. Is that what they are taught? Maybe they have to be that way? I don't know, but I am happy you have found someone to believe in your concerns. I hope someone will have some experience on here
to offer. Sorry to ramble, but I am happy to have you as a friend and I hope you keep us all posted.
Please have a peaceful and healthy season.
Debbie

I use my fluoride trays as mouth guards to keep from grinding teeth at night -- I had to trim them a lot to get a custom, non-irritating fit.

Gabi, my free flap has developed a sort of crevice between old and new, but it doesn't seem to interfere with anything.

Debbie I remember reading some months ago the problem with your cheek. I guess that memory triggered a little alarm bell when the talk came to tissue from the cheek being the donor site.
Pete as I am doing really well generally an option still is to do nothing. It is more than a crevis..more like chewed hard white bits just on the front section of the join between tongue and flap. Also have that fullness in the mouth with a more or less constant mild stinging feeling.
In any case I was able to book an appointment for the 9th of January with the surgeon so he can see again how it looks a few months on and so I can make the decision on which way to go. Was told last time it was my choice.

As from tomorrow I will have little internet access on and off for a few weeks so wishing you both and all the OCF family a Happy Christmas and all the very best for 2009.

I have hard, white bits on the right edge of my flap; path report said "Fragments of squamous mucosa with marked hyperkeratosis". Doc believes it is just irritation from nearby tooth.

Sorry to hear about your problems Gabe, I am also two years out of the surgery, and I am still having lots of problems, but after seeing my ENT last month for my 2 year post surgery check up, and he asked me if I was continuing with the Persistent Pain Clinic, and I said yes, he may just about said that this is about as good as it gets. Sorry this is not helping your problem at all. I am constantly biting the inside of my cheek from where they took the flap, and also do that sucking thingy. I have constant irritation on my tongue or what is left of it on my bottom teeth and I do worry about this turning into another cancer. Maybe this is as good as it gets. Like I said sorry that this is not helping you ... but in one sense it is good to see I am not the only one.

Hi Margie,
You are helping heaps because as has been mentioned often here everyone is different and it seems you have some of the same problems. Also have the "sucking thingy " which seems to be worse when under stress.
I am sure WE are not the only ones here with the same problem but people come and go so you may not get a response at the time you post so I am happy to hear from you.
As posted previously I will be in and out of contact in the next couple of weeks. (Should be packing and getting organised now but procrastination is also part of my new norm)
Have a great one or the best the you can
Cheers
Gabriele

Hi Gabriele,

Sorry to hear that you are having dramas. I can certainly understand your frustration with your appointments.

More than once I have nearly donged those guys on the head...and wouldn't be surprised if I do before my mouth is back in some sort of working order again. Sometimes they just don't get it.

I agree with you that they should do a CT scan to double check that everything is OK. I have had about 3 since my original surgery to make sure that I have been clear - also I have had a couple of x-rays....

Hopefully you will have a better outcome at your next appointment in the new year.

Happy Christmas

Karen

Gabe,
Merry Christmas! Was just thinking I should also add that
I felt much better after having a Pet/CT scan. It is a combination of both. I really think that would make you feel much better
about a decision as important as this.
Thinking of you!
Debbie

Operation on 12th Feb to fix problem between flap and tongue only made it worse.
Have just had my disinfection type shower, no deodorant,nail polish etc. etc... been fasting since midnight last night and will leave in around 15 minutes for another operation. Hope this is the last and the problem can be fixed. Expect it to be day surgery only although another general so home in around 6 hours.
My work colleagues think I must have something for the surgeon to keep going back for more...not true
I will be ecstatic if this works and it is the last.
I will post the stitches count either later today or tomorrow (around 15 on the 12th Feb but I suspect more today!!)
Cheers
Gabriele