Earlier this week I had surgery to release the floor of my mouth/tongue flap + a skin graft. When my jaw was reconstructed the original tongue flap had to be re-done because of damage from radiotherapy/chemotherapy - osteoradionecrosis (ORN). The treatments destroyed my mandible, (lower jaw) and also the flap that was anchored down to perform and function as a tongue and floor of mouth. Since the cancer was removed in 2007, I no longer have a mobile tongue.

The 2nd flap was built with skin and tissue from my hip that was extended through to the neck dissection join - the flap was incredibly tight and unmovable. Others familiar with flaps know how frightening and uncomfortable they can be, let alone when radiation has been given on and around the flap to create further complications with movement, healing etc.

I hope this release will provide more mobility to improve my speech and ability to swallow soft foods. Dribbling and drooling has been an issue since my jaw bone was removed and reconstructed. Once our facial bone structure has been re-arranged, the aftermath can be incredibly difficult in many ways. Anyone who has had their mandible jaw cut and shut would understand EXACTLY where I am coming from.

The skin graft on the tongue flap is full of stitches and looks ok. (ugly and gross to others. HA - that�s what they get for wanting to look!!) Judging from what I can see through the dressing, the donor site on my hip where the skin graft was taken, has a wound about 5 inches long. The plastic surgeon also pumped some fat into my chin to improve the contour and appearance of my lower face.

Due to my airways, and the possibility of complications with swelling etc, I spent a couple of nights in hospital under observation.

My follow-up appointment with the Plastic surgeon is next week. I�m not sure if the stitches in my chin and hip will be left in for longer or removed. I wouldn�t be surprised if the chin stitches stayed in longer because of radiotherapy damage to that area.

I will keep you updated following my check-up next week.

Karen

That's nnot. Fun surgery - but you sound kie you are doing good - baby steps right? Good luck - heal quickly!!!

Karen,

So good to hear from you. Wow, what a complicated procedure! I hope that this gives you the increased mobility you want. I know what you mean as I see Clark struggle with that tightness and pulling sensation every day. My best to you as you heal. May it be smooth and uneventful! Hang in there.

Anita

Thanks Cheryl and Anita.


Anita. Most days the tightness from the neck dissections, radiotherapy and lack of muscle etc, feels like I�m being strangled. Elastic with out the elasticity!! It is incredibly uncomfortable and limits mobility internally and externally.

About a month ago I was referred to a physiotherapist who had oral cancer + bilateral neck dissection in 2009. Since that time, he has practiced many exercises on himself to improve the tightness and pulling. So far, he has concentrated on exercising the muscles and stretching of my lower face, mouth and neck. Over the past few years, I have been to a couple of physios, but wasn�t happy because I made little, if no progress.

I will write down the exercises and pass them on to you so Clark can try them, or check with his physio if it is ok for him to do them.

Take care

Karen

Hi Karen, I'm glad that you had the procedure and the fat transfer that you told me about. What an ordeal! I hope it achieves all the things that you hope it will achieve! You are beautiful.

Sending you a hug and kiss!

Love,
Sandy
xoxox

Thanks Sandy, I appreciate your kind words. ((hugs)) back at you!!


So far the skin graft is looking good. The wound on my hip is still tender. (hmmm any wonder, surgery was less than a week a go)

Only time will tell how much the tongue flap skin graft surgery has helped. If it creates a gutter, improves the flap mobility or some how helps me control saliva, it will be well worth it.

My lower face along with my rebuilt jaw structure can�t be changed or improved since the mandible reconstruction due to ORN in 2008. As a result of that surgery, I have to do what ever it takes to improve mobility and other issues with what�s left in my mouth/oral cavity. Unfortunately, I don�t have many options available to improve my situation. Fingers crossed....I will take what ever I can - a small improvement is better than nothing!!

Karen

Karen, thanks for posting your procedure. I always read what you are having done and turn around and ask my doctors if those things can be done to help me. The answer is always "NO". One of these days my doc has to say "YES". You are amazing being able to go thru so many surgeries!

Wishing you all the best with your recovery.

Thanks Christine!. I have experienced the, �No way, what you�re asking can�t be done Karen,� and �Gees Karen, you�re pushing the envelope� replies a couple of times. Hearing those words felt like the roof caved in on me. I was shattered! Since my jaw and face was re-arranged, I have cried more often driving home from medical appointments than I have about anything and everything that has upset me rolled into one throughout 40 + years.

I understand one thing in my favor is I had a bone mandible reconstruction, not a metal/titanium mandible reconstruction, otherwise I would have more complications and restrictions. My story would be different. It has taken a while, but I�m coming to terms with the fact I can�t get the shape and length of my lower face or chin back. Obviously this upsets me, but I�m doing my best to deal with it.

I�m on a mission to stop the dribbling and drooling I experience all day. (similar to a stroke patient ) It drives me bonkers! If I get that under control, I will be satisfied and in a better position to deal with the permanent swallowing and speech issues I have.

Karen

Hi Karen,

What an ordeal you have been through. I will keep you in my prayers that the surgery achieves what you wanted! Keep us posted.

It sure has been an ordeal Susan! Thanks for your message.

Today�s check-up went well. My Plastic Surgeon is pleased with the release of the tongue flap and skin graft.

For the first time in 3 years I can move /lift the back of the tongue flap (left side) and feel it touch my upper teeth. The tongue flap and graft is swollen, but the tongue flap can now be moved. In a few days I will massage the tongue flap- skin graft to ensure it doesn�t stick down while healing.

Fat transferred into my chin is holding well. At the moment it feels firm. The fat has filled and shaped it a little. In a healthy chin, 80% of fat transferred remains, the rest usually dissolves into the body. When fat is transferred into a damaged radiated area like my chin, the percentage of healthy fat that remains drops dramatically, it doesn�t survive.

My chin and hip is bruised. The nurse removed the stitches from my chin. The stitches on my hip (donor site for graft) are dissolvable, as are the stitches on the tongue flap holding the skin graft.

The Plastic Surgeon said in a couple of months, once my tongue has settled, she would be happy to release the right side as much as she can. The reason she wouldn�t release both sides at once was incase the surgery turned ugly. The risk of damaging blood circulation in the tongue flap could destroy it causing the entire flap to die. Thankfully, everything went according to plan.

Next check-up is in a week.

Karen

Karen,

I love reading about your progress! Amazing! Keep up your positive spirit.

All my best-
Anita

Hi Karen,
Im from Melbourne too and Id like to give you hope and encouragement.
I also had tongue cancer in 2007. I had a flap (taken from my wrist) 9 hours in surgery and 6 weeks of radiation, then a second surgery to reduce the size of the flap.
My jaw bone is a bit dodgy and the odd chip has worked its way to the top, but the my great dentist(who was also my dentist at Peter mcCallum) at the Melb dental Hospital, isnt too concerned and says the bone IS damaged, but will get stronger over time. He did say I should NEVER go to a general dentist for any work on my remaining teeth. Thats ok and no big deal. I lost 4 teeth on my lower lhs, so I just chew on the right side now.
This was almost 5 years ago.
I was told I wouldnt talk properly again...and to make it worse, i am a professional Singer/muso. But when people tell me i cant do something, I go out of my way to prove them wrong.
My speech is now back to what it was before the cancer, and I have been back working as a singer since late 2008.
My tongue is still annoying and tight at times, as is my jaw and neck, but i dont notice the scar on my wrist (where they took the flap from), the skin graft taken from my thigh, the scar on my neck where I had 34 lymph nodes removed, and the tiny tracheo scar is a talking point! Its amamzing how many people have these for different reasons!
Trust the drs, and do your own research, but more importantly, trust the great people on this forum. They stopped me from wallowing in despair and terror with facts, statistics, and best of all, humour!
Im not saying it wasnt tough, it was..but it DOES get better over time.
I noticed you said you have been referred to a Physio in Melb. Would you be kind enough to send me his/her name? I'd also like to try that to relax my neck and stretch the part of my tongue that is anchored to the floor of my mouth.
Its better than it was when it was first done (probably due to continual singing) But after a while, I still need the odd painkillers and Serapax to relax it and stop it aching.
Id really like to try some kind of alternative therapy now, even if it can just lower the frequency of the more annoying days.
If you dont want to post it on here, you can email me- [email protected].
I wish you all the best, and if i can help you in any way dont hesitate to contact me.
Take care (and tell the drs to do the same!)
Lyn x