free flap reconstruction of gums
Just wondering if anyone else has had free flap reconstruction in mouth. It doesn't seem to be too common and I really would love to discuss with someone who has been through this.
Comments
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Hello, LyndaKay54, and welcome to the CSN H&N discussion forum.
I never had this procedure done but I think I have read about it.
Could you refine this a little more for us are you referring to actual gum replacement due to cancer or recession of gums or due to other reasons?
I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.
Take Care, God Bless
Russ
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Hi there,
I had a left forearm free flap reconstruction on my tongue back in 2012. I believe it’s very common. It helps with speech, eating, and swallowing.
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I had cancer in gums and spread to bone. Found out when I went to dentist for extraction of wisdom tooth. Also had neck dissection of 30 lymph nodes. Had spread to one during waiting period for surgery. They also removed all my side teeth. Thus the free flap.
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So, Lynda, I would say you went through a difficult procedure or possibly multiple procedures.
So you had cancer of the gums and then it spread to the jaw bone and in the meantime of waiting for surgery for the previously found gum and jaw cancer, the cancer spread to a lymph node which was discovered among the 30 lymph nodes later removed.
So I have a couple of questions.
Did you have any follow-up radiation and or chemotherapy for either lymph nodes or the cancer in your mouth?
What area of the mouth was this issue in, top or bottom, right or left?
How did they deal with the cancer in your bone was it scraped or removed by surgery and or was there a bone graft or replacement?
At any point was the cancer in your bone considered or referred to as Osteoradionecrosis?
So they removed all the teeth on the one side of your jaw, then is this where the free flap was done?
When doing the free flap could they just use the excess gum material after extraction to fold it over from both sides of your extraction area and make a flap that way or was it necessary to remove tissue from another part of your body to use in your mouth to cover the opening from the extractions and bone cancer thus making a free flap this way?
I am asking these questions to learn and be clear on your experience so that it may help others.
Wishing You The Best
Take Care, God Bless
Russ
NEGU (Never Ever Give Up)
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A lot of questions. I'm new here , so please forgive me if I didn't explain myself well. The cancer was in gum and bone…bottom back left. When surgery was performed, they first removed the cancer from all areas. Surgeon said they got it all. They also removed 30 lymph nodes as a precaution. They told me prior to surgery they would do that, also as a precaution The skin and bone was taken from leg and fibula bone. (This was the free flap). They also inserted a titanium plate along gum line. It was a 19 hour surgery. I had 25 sessions of radiation afterwards. It's been 3 months since surgery and my radiation finished 2 weeks today. I had a major burn on neck which is gradually starting to heal. There were sores in my mouth and I could not swallow solids due to pain from radiation in my throat. I can now tolerate liquids and testing a tiny portion of food each day. Can't taste anything but coffee for some reason. Hopefully I was able to give you a clearer description of what is going on. I'm hoping someone else who has gone through this can explain their experience also.
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typo error. It was a 10 hr. surgery, not 19
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That was quite some time ago and sounds like it was successfull. How did you feel right after surgery. Did you have pain and were you able to eat and swallow. How long did free flap take to heal? I will see my surgeon and oncologist in a month.
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Lynda, that was a very good explanation I understand now.
You went through quite a major situation and operation.
This is no small feat to accomplish this and endure what you went through.
And not only bone replacement but a titanium plate also.
I am glad for you that you are able to get some liquids down already and are testing small bits of food.
I am with you on the coffee, it seems no matter what I went through in my 3 cancers, in recovery I was always glad for that first cup of coffee and could taste it and for some reason, it gave me such comfort and a reprieve away from what I was going through for a short bit.
As you go along the days will get better and you will get recovered and with H&N cancer and radiation it is not a quick process but a sure process, be patient.
Take Care, God Bless,
Wishing You The Very Best
(NEGU) Never Ever Give Up
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Russ, thanks for your words of encouragement. It meant a lot.
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That was quite some time ago and sounds like it was successfull. How did you feel right after surgery. Did you have pain and were you able to eat and swallow. How long did free flap take to heal? I will see my surgeon and oncologist in a month.
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I had a flap done in February of this year 2024. I was in the hospital for 13 days. I had a malignant tumor that was in my right sinus cavity and it invaded my right upper jawbone, orbital bone, and teeth. Doctors removed my entire upper palate, 5 jaw teeth, and ground, or rather cut as much of my jawbone off with causing brain infection up to my orbital bone. They took part of my wrist and arm, along with the artery to make a new upper palate. I spent 6 weeks in radiation therapy. I have lockjaw due to the surgery and having my mouth held open for 10 hours. It took 6 hours for the surgery I went into recovery, where alarms went off of a possible heart attack due to a blood clot in the artery they used from my arm. I went back to surgery for 4 hours. It has been a bumpy ride. But I have great Ear, Nose, and Throat Specialists and a wonderful Radiation Oncologist. I will be monitored with rotating MRI's and CT scans every 3 months for the next 5 years.
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Danabird, thank you for explaining your situation. You've been through a lot and even a couple scares. How are you feeling now? Are you still in pain and are you able to eat and swallow? Sounds like you have some good surgeons you're happy with. It's just been over 3 months from my surgery and it feels like a truck hit the inside of my left jaw.and gums. I don't feel like there has been any progress or that it will ever get better. Maybe I'm being impatient, but I'm scared too that this is how it will be always.
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I haven't had any pain at all from the surgery. I feel and sound like I have a mouth full of mud, though. LOL.
I'm sorry, I have a tendency to make jokes at the wrong time. I think its just a coping mechanism. If you haven't had to go through any radiation, bless your soul. The radiation, every day for 6 weeks, tore my mouth up. Other than that, I have what they call phantom pains where my jaw teeth used to be. Its not real bad pain though. One thing I do know is, don't trust your tongue. My tongue flops around feeling of that new flap, and I have worried myself to death over it, thinking it was going to come apart, that I had metal under it, that they left pieces of teeth in there, etc. I'm telling you, I just had to say "stop it". Part of my neck where they cut muscle and tendon in half to get to the blood clot, is still numb after 7 months. Half of my tongue is still numb also. The doctors said that I will be numb for maybe a year or more until the nerves start waking up again. The side of the head, the jaw, the carotid artery area, my shoulder muscle, and my upper arm are all connected by tendons, muscles, and nerves. When I wash my hair I can feel my neck tingling. Its so weird.
I am able to eat and swallow. That was the hard part. I had to take it super slow. I was on liquid diet for over a month. Then pudding, milk shakes, etc. while on radiation. The doctors told me to put tongue depressors in my mouth on the side that has teeth at top and bottom. I put one in, let my jaw relax and add another one. I have had up to 7 or 8 in there and my mouth is slowly opening working like its supposed to. I'm not completely the same but I AM GOING TO GET THERE. I'm 7 months out and the lock jaw is what is making me aggravated. I saw a Maxillofacial Surgeon last week. He told me he could take out the radiation damaged muscle and replace it with tissue from my leg. He could only give me a 50/50 chance of it working and a 50/50 chance that I wouldn't heal and it would get infected causing other body parts to be harvested for bone to replace the jawbone in the event that it got infected. Plus he told me I would NEVER be able to open my mouth more than 2 finger widths, with surgery that was successful. I said "No Thanks". Here's my secret though….my chiropractor has gotten my jaw moving and my mouth to open 2 finger widths already.
Please don't give up on getting better. This is what I live by before and after I had surgery:
Do what you gotta do until you can do better. Refuse to give up and if someone tells you that you can't or won't, blah, blah, blah! You tell yourself you can. I'm stubborn and I'm getting there. You are still in the neck of the woods where you may choke a little, when swallowing. Just go slow. I can't drink anything and put my head down. It comes right out of my nose! My grandsons were sitting at the table one day and I took a drink of milk. It shot right out my nose and they laughed until their bellies hurt. I did too. Some things you just gotta laugh at because there isn't anything you can do about it except TAKE IT SLOW. Keep me updated on your progress. I know you're gonna make it there.
I'm 57 years old and this is me pre-surgery. I look exactly the same with the exception of the neck scar, trachea scar, and arm scar where they took the flesh and artery to rebuild my upper palate. Please don't get discouraged. If you do, think of something to tell yourself to make you keep trying and say it over and over. Every day, I get on Facebook and put up a good morning hello to those that have access to my page. I do it, because I am so thankful I have scars to look at. I'm thankful that my doctors used my body to save me. I want everyone to know that I am wishing them a great day, because I know I'm going to have one.
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Thank you, Danabird for such an inspiring story of your cancer situation, treatment, and victory.
Like many of us, you certainly have gone through a lot.
But what I like is your determination to keep going and make things better and never give up.
That's the way to do it.
In fact that is our motto on here "NEGU (Never Ever Give Up)"
I have read so many stories where people were told this wouldn't happen or their healing in a certain area was at its best and they didn't give up and proved the doctors wrong by going above and beyond.
You are a bright spot of inspiration on the board here and by looking at your picture you would never know you had surgery, or any head & neck treatment for that matter, you are simply beautiful.
I celebrate with you.
Take Care, God Bless
NEGU (Never Ever Give Up)
Russ
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Hi Danabird, thank your for going into detail about your situation. What a strong willed woman you are. I'm trying to think positive, but it's not been easy. Like you, I feel like I have a mouthful of mud and steel. It's not comfortable. I had 25 sessions of radiation and it "tore my my mouth' up also. Burning throat (couldn't swallow), sore inside mouth and on tongue, and no taste. I'm 3 weeks out of radiation and starting to swallow some soft food, but can't move tongue around to chew. It all has to stay on unaffected side. Taste is still iffy. Can't taste coffee and soft grilled cheese. Can't taste icecream but the coolness of it feels good in my mouth. The donated skin in my mouth is still very swollen. I go to the surgeon again next week and am anxious on what he will say as I am still suffering. Hearing what you went through was reassuring that what I'm going through is somewhat 'normal'. You're the only person has actually had some similar symptons and responded. And I am grateful to hear from you. Thanks. And by the way, you look great. My mouth is still crooked and scars on neck are tight and noticeable.
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